Blogging Against Disablism Day 2017 will be Monday, 1st May 2017

As with last year, I've given BADD2017 its own page, so please click here to read all about Blogging Against Disablism Day 2017.

Thirty Six

Today is my thirty sixth birthday.

A chaotic December meant I didn't do this last year, but I thought I should try to review this year, particularly as it featured such big chunks where I've been decidedly unwell, and there were so many things I wanted to do, had agreed to do or half-started that I then had to give up because of my deteriorating health. Before I started writing things down, it felt like there would be very little to say, but I did really quite a lot in the spring and haven't been completely idle since. This is going to read like a dreadful bragging Christmas Letter, but it's my birthday and this is mostly for my own sake.

• I had started doing a bit of editing for the F-Word towards the end of last year, but I think it was at the beginning of this year that I officially became Features Editor. Then my health deteriorated and I had to give it up this summer, but it was a very interesting and satisfying experience - I had previously enjoyed the mechanics of editing other people's work, but the best bit was facilitating others to say what they wanted to say to a significant audience. 

I model a winter lettuce - a woman with a lot of hair holds
a lovely green lettuce as big as her head.

• Early on in the year, I planted a load of vegetables. As the spring progressed into summer, my health meant things got a bit out of control, but those things that weren't killed off by neglect included tomatoes, lettuces, a small amount of pak choi (the caterpillars do love the stuff), radishes, baby sweetcorn (that was particularly good), peas, strawberries, French beans and runner beans. Oh and potatoes - lots of potatoes grown in sacks. I now have two table-height vegetable patches in the garden so I don't have to bend down.

• I had written this article last December but it was published this year and I'm very proud of it.

• We looked after a lovely old border collie for about a month, which was rather nice.

• I have had a lump in my armpit for the past six months. After the first two, it triggered NHS Lump Panic, eight individual strangers got to see my naked breasts in one afternoon but it was all fine. All this happened at a time when I could really have done with a break, but the care I received at the Breast Clinic was extremely good. Do get your lumps checked out.

I model the mermaid's tail - an enormous
mermaid reclines in a wicker chair with a
somewhat seasick expression on her face.

• I made a mermaid's tail sleeping bag for my niece. I scrapped an earlier attempt because it was a bit too small - at least, a four year old would grow out of it in no time. The finished version should serve her well if she is still interested in being a mermaid into middle age.

• I wrote quite a few blog posts and a couple of features for the F Word in the first half of the year. My favourite is this about women who, by virtue of being disabled, old, fat etc. are considered sexually and romantically unattractive by our culture.

• I drove a car! I have had a provisional license for a few years, but this year, on one occasion, I actually drove. It was awesome!

• It was the twentieth anniversary of my becoming sick in August, so I wrote a series of posts about chronic illness and coming to terms with loss. As, if you're reading this, you are almost certainly aware.

• I have been writing and editing fiction. Just not nearly as often or as enough as I would like.

• In the midst of everything, they happened to discover that I was very deficient in Vitamin D. I've now got an evangelical zeal about telling folks who also might not get out much that they should get their Vitamin D checked. However, I am too polite to give unsolicited health advice, so this may be the only time I ever mention it. 

• Purple Prose, a book about being bisexual in the UK was published. It includes some of my words as well as the words of far more interesting and brilliant people.

• My Dad retired, which has been absolutely great. His work was stressful and now he is not only very much more relaxed, but we see a lot more of him and have had some modest adventures together.

• I had lessons in the Alexander Technique to improve my posture, which is something I have fancied doing for years. Of course it hasn't fixed anything, but it has dramatically reduced certain kinds of pain in my back.

Snuffles the hedgehog - a fluffy brown hedgehog eats from
a dish of mealworms. She was one ill-tempered hedgehog.

• We installed a camera to watch the garden after we'd gone to sleep, to monitor the full extent of hedgehog activity. We saw a lot of hedgehogs and one night, a tawny owl landed in the garden and sat down with one of the hedgehogs to have a meal.

• Stephen acquired a tabletop game called Zombicide, where you go round killing zombies with dice rolls. This turned out to be tremendous fun and we have spent several happy evenings liberating prison blocks from the zombie hoards. 

• We saw a little more of our nephew and niece this year and had some really good times with them. They are both fantastic children and so much fun to be around. 

A young blackbird - a brown bird with pronounced beak and
speckled breast, sitting in a bush with white flowers.

• We think at least one hedgehog was born in the garden this year, as were some sparrows and a blackbird (left). This chap startled me when I was trying to see if he was still in the nest.

• Politics has been pretty grim. The world's progress towards being a more peaceful, freer, happier, healthier place - which has been considerable, even in very recent times - is in grave danger of stalling. A very great number of good folk have brought that progress about through hard work and I hope, a similar effort by very many people in both big and small ways will get us back on track. That may sound a bit crass amid all this light personal news, but like a lot of people, politics has been deeply personal this year.

• We managed to get to the theatre for the first time in a few years to see the Cambridge Greek Play do Antigone and Lysistrata. The latter was particularly brilliant, satirising the ongoing political nonsense and with songs in Ancient Greek we were all invited to sing along with. 

Two happy people at a picnic bench
with a field in the background.

• As everyone knows, Stephen is an amazing person, but he has been particularly heroic this year. We've always performed care for one another in ways which merge with everyday kindnesses and physical expressions of affection, but this year the work of keeping us going has shifted very heavily onto his shoulders. While it has been tough, we have not only survived, but we've often had a great deal of fun.

• It's been a very difficult year for several of our friends and family; other people have had major health crises, bereavement and money worries, as well as the personal effects of the year's disastrous political events. Thus I come to the end of 2016 with a heart full of love and hope that next year is much much better and brighter for those who have had to battle through to this point.

I hope that anyone who actually read down this far has a wonderful, peaceful holiday season whatever you're doing with it and a very happy New Year.

Blogging Against Disablism Day 2016 will be Sunday, May 1st

I'm putting this year's Blogging Against Disablism Day on its own page (linked on the sidebar), which will also be the place where I compile the archive.

Please head over there, please spread the word and please do write something and report back on or around May 1st if you are able.

Thank you in anticipation!

Freedom from criticism is quite the opposite to freedom of speech.

Freedom of speech has never been the freedom to speak without consequence. Freedom of speech means freedom from interference, harassment, intimidation, imprisonment or violence. But speech, like anything we do, has real life consequences. There is no freedom of speech if people are allowed to talk and others are not allowed to object to what they've said. 

This weekend, famous philosopher, author and university professor Roger Scruton was relegated to the obscurity of the BBC News website (link to text) and BBC Radio 4 (link to audio) to talk about freedom of speech. He seems about to explore the potential ills of criminalising hate speech before meandering in an entirely different direction, concluding. 

“Of course, we have moved on a bit from the Middle Ages. It is not the man who is assassinated now, but only his character. But the effect is the same. Free discussion is being everywhere shut down, so that we will never know who is right - the heretics, or those who try to silence them.”

I was obliged to study Roger Scuton's work as a young philosophy student, so I feel qualified to translate:

“Of course, we have moved on a bit from the Middle Ages. Outspoken men I personally relate to don't get assassinated, but instead the views of other kinds of people are heard alongside ours, which can make us look ridiculous. Free discussion is everywhere, and views like mine face powerful and articulate opposition.”

Freedom of speech means that Roger Scruton should be free to express his views without harassment, intimidation, violence and so forth. He has arguably earned the right to have far greater access to public platforms - television appearances, newspaper articles and so on – than someone like me. I might disagree with pretty much everything he stands for but that's not a problem – here he is, right now, helping me explain an idea to you. Thanks Rodge! .

What Roger Scruton is absolutely not entitled to is to express his views without criticism. For example, he describes how homophobia was invented (as most words were at some point) and is used to ruthlessly attack, um, homophobia: 

“The orthodox liberal view is that homosexuality is innate and guiltless. Like the Islamists, the advocates of this view have invented a phobia with which to denounce their opponents. Deviate in the smallest matter from the orthodoxy, and you will be accused of homophobia and, although this is not yet a crime, it is accompanied, especially for those with any kind of public office, by real social costs. “

And yet, here is Roger Scruton, on the BBC News website, implying opinions that are already in the public record; to his credit, he overcame much of his earlier prejudice, but he still objects to same-sex marriage or adoption. And yet this weekend, he was still being published on the BBC News website in a piece to be broadcast on the radio. When Scruton speaks of “real social costs”, I can only assume his lesbian friend didn't invite him to her wedding.

(Incidentally, Scruton is the co-author of the article Same-sex marriage is homophobic. So he's right about at least some people abusing the word homophobia for the sake of their own particular arguments.)

This is how history works. When I was a kid, homophobic views were widespread and freely expressed. In 1989, Scruton himself wrote that society was correct in instilling a revulsion of homosexuality in children - some of his contemporaries said and wrote far worse. Section 28, which effectively prohibited the discussion of homosexuality in schools, was not repealed until four years after I had left school. When I was growing up, someone who supported same-sex marriage had the right to say so – they certainly wouldn't have been arrested for it - but they would have struggled to get any kind of platform outside LGBT magazines. Gay and bisexual teachers, let alone people in positions of more significant power and status were still frequently closeted. That's real social costs.

But our society had an argument and the argument was won. Not that we have achieved consensus, but most people either support or are indifferent towards same sex marriage. Conscientious people like Scruton have found at least some of their prejudice to be intellectually unsustainable. This is because gender doesn't make any moral difference to sex, romantic partnership or the creation of families. Homophobia – including, violent homophobia – still exists within our culture, although it is much more often subtle and implicit. Scruton's views are in the minority. He still has a very loud voice. He just can't expect such a great applause whenever he uses it.

To say so isn't silencing him. To bombard him with abusive messages would be silencing. To threaten his peace or his person would be silencing. To hack the BBC News website and take down his article would be silencing. He's not being silenced. 

Scruton may well have been harassed about his views, but he doesn't describe this. He doesn't describe any specific negative effect of speaking out until he arrives at Nobel-prize winning biochemist Tim Hunt. Like the rest of us, Hunt was not entitled to say whatever he liked without his words having consequences. His character was not assassinated – he made a fool of himself, just as surely as if he had turned up to work drunk in his underpants. Nobody accused him of a crime or of any underhand activity other than undermining the status of women in science with sexist jokes said in public.

"A lifetime of distinguished creative work has ended in ruin." is a wild exaggeration; the chap resigned at the tender age of 72, he may well work again and few history books will record anything but his contribution to science. We're still talking about it now because it happened this year and stirred up a lot of existing frustration about the treatment of women in science. To my knowledge, Hunt was not harassed or threatened, but merely laughed at. A lot. He had claimed female colleagues kept falling in love with him. It's no hanging offence, but no-one can say that and not look like a prong.

It's funny Scruton's piece should be published in a week that a very different heretic (and one who has done far more to earn that title) Germaine Greer made a stand for the voiceless by appearing on fringe news outlet, BBC Newsnight, complaining about a petition to stop her talking at Cardiff University, because of her widely published transphobic views. This was a petition – people exercising their own freedom of speech - asking that she should be no-platformed. Student Unions are not obliged to provide platforms and audiences for anyone who feels they have something to say.

Cardiff University said they did not endorsed Greer's views but would not stop her speaking. Greer decided not to go. She would have been met by a far smaller audience than that of Newsnight or the many other news outlets who have published both her complaints about Free Speech, as well as her hateful remarks about transgender women in the last few days (including the front page of the BBC News website, up and left a bit from Scruton).

Greer has the right to say what she likes, but not wherever she likes. Nobody has, but Greer has far more opportunities to air her views to huge numbers of people than I ever will. What Greer has experienced is, ironically, exactly the same minimal harm she claims to be committing against transgender people when she denies their very existence; hurt feelings. 

The fact that people with as diverse views as Greer and Scruton could be making these complaints and so loudly, when nobody who objects to their views is being heard (Show me a prominent article about the ills of homophobia this weekend. Where is the interview with Rachel Melhuish who set up the petition against Greer's talk?), suggests something about the way freedom of speech currently works in our culture.

So let's talk about actual silencing. I write quite a lot about discriminatory language and the media and much of this comes down to people shouldn't say that. Language is tremendously important. The way women, men and minorities are spoken about and represented is tremendously important.

When I say, “People shouldn't say that.” I absolutely mean it. This isn't the same as saying "People shouldn't be allowed to say that." let alone "People should be arrested for saying that." 

However, people should be criticised for saying foolish things - this is part of freedom of speech. Sometimes, public figures should lose their jobs over the things they say – the rest of us run exactly the same risk and are likely to meet with far less tolerance. However, fundamentally, I want to win these arguments. I want to help persuade folk to treat others as they would like to be treated.

This has limits and those limits should be obvious. I didn't think very hard when I became the Goldfish with my painting of a goldfish as an avatar, but over the years I've become acutely aware of the way that I escape the abuse that other women with feminine handles and photos of themselves routinely experience when they talk about any political issue. Young women, women of colour, women pictured wearing headscarves and trans women are targeted with particular bile and there's reason to believe they have less recourse to justice.

Harassment and abuse are always unacceptable and should be far more vigorously prosecuted. These things force victims to change their behaviour and create a genuine obstacle to speaking out. For some minorities – particularly trans people and Muslim women – the high probability of receiving abuse any time they draw attention to themselves may be enough to keep them quiet.

Criticism - even unreasonable, lazy or incoherent criticism - doesn't have this effect. Nobody wants to be called a bigot, and Scruton has personally demonstrated that not everyone uses words like homophobia (or racism, sexism etc.) in a consistent and coherent way, but being told one's speech is prejudiced cannot be compared to threats of violence, personal and sexualised insults and so on.

Meanwhile, this last week, while Scruton and Greer were speaking without opposition in the national press, it was announced that there will be a new register, like the Sex Offenders Register, which would prevent anyone with a conviction or civil order for "extremism" from working with children or young people. Nobody is clear quite what "extremism" is. We already have disasters like the Prevent Strategy which basically monitors young Muslims for signs of alienation or radicalisation, including what they say in public. And earlier this month, not at all famous Bahar Mustafa was charged for offenses apparently relating to her use of the hashtag #killallwhitemen on Twitter*, while the very famous Katie Hopkins, who wrote of refugees as "cockroaches" who should be gunned down or drowned before they reached Europe, faces no criminal action. 

Obviously, I don't mean to suggest that we should only care about certain kinds of silencing, or extreme cases where people are menaced into silence. Nor do I believe that one has no right to complain of ill treatment if someone else is experiencing worse (someone always is). However, I do think it is worth observing that there are patterns in the people and opinions which do get sidelined, shouted down or even draw the attention of the criminal justice system.

Freedom of speech is a vital aspect of a free society and something we may always have to fight for. To reduce it to the freedom for powerful people to express their prejudices without meeting the disapproval and criticism of others only distracts from and undermines the real battle taking place. 

* The nature of this kind of case is that the press cannot report exactly what Bahar Mustafa said that was so offensive, given that it is being described as "grossly offensive" in the charges. It may be that she did say something absolutely outrageous (#killallwhitemen is very difficult to take seriously).

The 10th Bloggerversary Post

This morning I thought, "It must be about ten years since I started Diary of a Goldfish." and indeed it is - Sunday was the tenth anniversary of my very first post. I started on the casual suggestion of my brother-in-law, before I ever really read a blog. I feel quite lucky that I plunged into it without much thought - if I had had a particular agenda or theme, it might not have proved so useful.

A lot has happened in ten years. I wrote a novel and am almost done with my second. I got married to the wrong person for the wrong reasons, met Stephen, divorced and married the right person for the right reasons. I learned to paint. I've seen a fair amount of bereavement but I've gained a nephew, niece and a new extended family. I moved home four or five times, depending on how you count it.

As a result of blogging, my words have ended up all over the place; The Guardian, the BBC, education resources, disability studies periodicals. I got my face on the front cover of The Cambridge City News (along with some rescued kittens - it was a real slow news day). I've been invited to join Where's the Benefit? and the F-Word. I never had any ambition to do any kind of non-fiction writing, so it's been great.

I've also made some very good friends and had some very interesting and important conversations. I founded Blogging Against Disablism Day, which I know has come to mean a lot to many people.

However, this blog is really a gift you give to me, dear reader. I don't imagine I'm providing any kind of public service or useful function - it's really nice when something I write is useful or interesting to someone. But the person who has benefited the most from Diary of a Goldfish is me. It's given me lots of writing practice and helped my writing to improve. It has given me a place to express myself, vent and lecture people on subjects that matter to me without awkward social consequences. And I know you're there, in varying numbers, so I can pretend you're hanging on my every word. I sometimes get lovely comments, here and elsewhere and that stuff is huge to me. At a particularly difficult point in my life, I had an A4 print out of the nicest things people had said about my writing.

My blogging has changed a lot in ten years (as the world of blogging has). Earlier on, I was more or less keeping a diary, which was useful because, at the age of twenty-four, I was still struggling to be the protagonist in my own life story. Later on, some of these posts became downright disturbing. While it was going on, nobody knew about the violence in my first marriage and I rarely had to explain anything - my face was never bruised, I never sought medical attention. However, after my divorce, when I went through my archive in order to completely anonymise my first husband, I found that it was as if I had been compelled to write on days where there'd been violence and instead tell a funny or sweet story where no-one got hurt. I was spinning stories to myself, in public. Sometimes I told abject lies - entirely unnecessarily lies.

I find that baffling and weird, even now. I took all these posts down, by the way. There are plenty of posts where I express ideas or opinions I no longer agree with, but I took down anything I found where I actually lied.

There have been a few points where I thought about ditching the blog, possibly starting afresh, but I'm really very attached to it. If I had thought more about my 10th Bloggerversary coming up, I would have prepared a better post.

Stephen suggested that I should post links to my "Top Ten Posts". I don't know if these are my favourites - there's almost a thousand to choose from and I'm not going to spend the next week reading through my entire archive. However as a fairly evenly spread selection (2005 was just too weak):

1. Love is real, Real is love (2006)
2. Above and Beyond: Butch's Diary (2006)
3. Propaganda (2007)
4. I thought I was someone else, someone good (2008)
5. How to be a Disabled Villain (2009)
6. It Was Thirty Years Ago Today (2010)
7. Looking After Yourself as Radical Political Activism (2011)
8. Domestic Violence: Why Zero-Tolerance is So Tough (2012)
9. How Marriage Became More Meaningful (2013)
10. The History of My Adult Life in About 100 Objects (2014)

And now, having skimmed the archive to retrieve these links, I realise I really ought to organise some pages of links to the three or four subjects I keep coming back to.

Thank you all very much for this. Where on Earth are we going to be in another ten years time? 

And why shouldn't Idris Elba play James Bond?

Here are some facts about the fictional character of James Bond as represented in the books and films:

• James Bond's age shifts randomly along a range between 30 and 57 years old. In the most recent movie, fifty years after the first book, he was 44. 
• Bond's height varies between 5'10" and more than 6'2". 
• He has a range of upper middle-class English accents, with the exception of one Sean-Connery-trying-to-sound-English accent.
• His eyes are blue-grey, blue and brown. His hair is blond, brown and black. He has either smooth complexion or a significant facial scar.
• His parents are probably Scottish but possibly Swiss. 
• Sometimes, he gets attached to a woman and is very upset if anything happens to her. Other times, he shrugs off the death of a lover like a broken nail.
• His entire personality shifts about in subtle and not-so-subtle ways. 

Different creative people, different writers, actors and directors treat their subject differently. But here are some ways in which James Bond has always been the same:

• He is a British secret agent with MI5, code name 007, etc.. 
• He's really into stuff. He likes expensive clothes, watches, weapons and cars.
• He likes a dry martini, shaken but not stirred. 
• He enjoys having sex with women that either he or his enemies have power over. 
• He is suave, cool and charismatic. He suits tailoring. 
• He is serious but not especially earnest. 
• He is quick-witted, with a dry sense of humour.
• He is a bit of a git. Sometimes a lot of a git, but always a bit.
• He is physically imposing, fit, fast and strong.
• He is taller than the average British man.
• He is white.

Together with height, whiteness is the most superficial trait that all versions of Bond have had in common. Whiteness is not part of the essential character of James Bond. Whiteness is part of the origin of Bond, along with the Cold War and all manner of 1950s period detail, long since discarded by film-makers. Whiteness is not anachronistic, but whiteness as an essential quality, important to Bond's character, context or any of the adventures he gets up to, is.

A selection of outraged comments about the suggestion of Idris Elba as the new James Bond from the Daily Mail website, was making the rounds on Twitter (I found them so unlikely, I had to verify them. At Christmas time!). Among other nonsense, there are various demands that white actors be allowed to play fictional characters who had previously been cast as black.

These fictional characters included:

Shaft
Idi Amin
Martin Luther King
Nelson Mandela

So, in other words, just Shaft; a character who can boast only a handful of films, only one of which everyone saw. A character who has only ever been played by one actor (remember, Samuel L. Jackson played Shaft's nephew). A character who lives in the Harlem of the 1970s, whose friends, contacts and context are largely black. A character whose experiences are informed by the racism of his country at the time. Shaft is a big black private dick, who's a sex machine to all the chicks.

Shaft is black as Hornblower is white. Hornblower is a British naval commander in the 1800s. There were British black folk about during the Napoleonic Wars, but racism would make it impossible for a black man to have such social privilege and education, let alone become a naval officer. Hornblower is a great white naval nob, who never thinks of petticoat when he's on the job.

Other characters have far greater flexibility. There are examples of characters, previously played by white actors, played by people of colour without a hitch; the new Annie is black, the recent Ironside is black (though played by a non-disabled actor). Both Guinevere and Elyan in the TV series Merlin (although there are people of colour in the Arthur legend) are black and Lucy Lui plays Watson in the US version of Sherlock. The only production of Julius Caesar I've seen had an all black cast and was fantastic. Yeah, Julius Caesar probably had paler skin, but he also spoke Latin and he probably died saying, "Aaaarrrrggghhh!"rather than "Et tu brute? Then fall Caesar!"

Far far more often, literary characters are made white, or much paler, on our screens (just in the last year, see Noah*, Exodus: Gods & Kings and Half of a Yellow Sun). In the same way, disabled characters are either made non-disabled or played by non-disabled actors. The excuses are that there are too few actors of colour with box office draw and no famous disabled actors at all (maybe you have to get cast to get well-known).

However, the fact that the same industry routinely straightens out lesbian, gay and bisexual literary characters suggests another motive. There's a widespread belief that white straight non-disabled men can only tolerate movies and television shows where people like themselves predominate. This despite the fact that movies with strong female characters do very well indeed.

(Not that long ago, all significant characters were played by white folk. The most recognisable Othello on film remains a blacked-up Lawrence Olivier. Of course, in the earliest productions, even Desdemona was played by a white man. Times change. People change them.)

I'm not suggesting that we attempt to counter this erasure with a black Bond. I'm suggesting that if we can fiddle about with characters in order to appease the variously bigoted elements of the film and television industries, then there can be no argument about preserving the whiteness of a fictional character if there's an excellent non-white candidate.

Idris Elba would make an excellent Bond. Not all talented and charismatic actors can do it as there's a certain kind of charisma required. Even the omnipresent Cumberbatch has his limits. Elba is not the only candidate right now - Tom Hardy could do it, maybe Damien Lewis - but I can't think of anyone who would do it better.

Meanwhile, there are good reasons, in addition to pure merit, for casting a black guy as Bond or any lead role. Folk - especially young people - need to see themselves represented in a diversity of roles. Folk - especially young people - need to see one another represented in a diversity of roles. James Bond isn't exactly renowned for this, but hey.

Wednesday's New Yorker featured the following cartoon:

[A domestic scene where an older white lady clings to the arm of a tall black man in a santa outfit while an older white man with a long white beard looks on. The caption reads, "You've been Santa for a thousand years. Let Idris Elba have a chance!"]

It acknowledges that Idris Elba is a man of colour with an immense draw. But, well, who says Santa has been the same white man for a thousand years? Sometimes the Santa in a store grotto is black, as he is in Run DMC's Christmas in the Hollis video; he's just never black on Christmas cards or in movies. But he does change. He puts on and loses weight. He frequently restyles his hair and beard. He can be aged anywhere between about 35 and 80. He changes, possibly even regenerates. Is there any essential quality to Santa's character, context or behaviour that suggests whiteness?

And yes, on regeneration, the Doctor of Doctor Who could be a person of colour (though not Idris Elba - he too has his limits). The Doctor could also be a woman or non-binary, have a physical impairment or whatever else. Not should, just for the sake of it, but if an actor is right for the part.

We're talking fiction. Things still have to fit together; characters must be consistent, plots must hold. But the possibilities are as expansive as the silence that follows the question, "Why not?"



* The Bible makes no reference to Noah's race or his geographic location (unlike the story of Exodus, which is quite specifically not a time or place with a lot of Northern Europeans running the show). However, if you're going to recount a world-famous origin myth and you the resources of a major production, you have really four options:

1. Cast people of African descent because that's where all our early ancestors were.
2. Cast a great mix of ethnicity, to represent the diversity of humanity on Earth. 
3. Cast people who look like the people who created and eventually wrote down the myth, 
4. Cast only white people, because only white people matter.

These things do not apply if you're making a student film, a school play or a theatrical production with a small company. But in a big budget movie depicting a myth that belongs to a huge proportion of the world's population, the decision to employ an all-white cast supports a very particular world-view. 

Who is manipulating us on social media?

It is Apple or Lenovo? A gorgeous white man with dark
hair and glasses clutches his mysterious laptop.

When Google’s search results became personalised, anxious voices were raised about the danger of keeping individuals within their own happy filter bubble, where they only saw things in which they had an established interest, only heard opinions of which they already approved, only came into the presence of people like themselves.

Similarly, when last month it was revealed that Facebook had been conducting unethical psychological research on its users, people were outraged that they could be so manipulated. Laurie Penny said

“Nobody has ever had this sort of power before. No dictator in their wildest dreams has been able to subtly manipulate the daily emotions of more than a billion humans so effectively." 

And I’m thinking, what about us?

Now, I can’t tell you how big a fan I am of social media – without it, my universe would often shrink to the size of a bed. However, the biggest danger of social media is how, quite unconsciously, we influence and are influenced by one another. None of it is terrifying but - just like bearing in mind that all our free tools belong to commercial interests with American cultural values - this is stuff we need to think about.

On-line and off-line social behaviour differs in three main respects. The first is by far the most explored; with fewer clues to social status and identity, people talk to others with an ease that doesn’t occur in the same way off-line. This is mostly a good thing. Disadvantages are obvious.

The second is that on-line, a person may socialise with a wide group of people at any time of the day or night, in almost any physical location. Things can get intense, which isn't always a problem - a lot of information can be exchanged and friendships can fuse fast. Yet equally, this social world can become psychologically inescapable. It can be hard to leave alone, whether you’re in the middle of a great conversation or a raging argument. It's in your pocket. It sleeps beside you at night.

The third is this world’s typical reliance on one central and cohesive identity for each person. Some people have a few different on-line handles, each used for a different purpose. But most people have just one. Off-line, a person may be one version of themselves with work colleagues, perhaps another with the boss, another on the train, at home, with the in-laws, at choir practice, in the football team and so forth.

In the olden days, the internet was yet another place to be where you could be another, often freer or more authentic version of yourself. It was a place marginalised people flocked to, in order to be around other people like them and to find acceptance of the versions of themselves (as members of sexual minorities, disabled people, crumhorn obsessives etc.) that wouldn't be made so welcome elsewhere. Facebook, in particular, encourages us to consolidate all our identities into one definitive self. 

We need to be aware of this and how it affects us and I don’t think we generally are.

Almost the first people I found on-line as a teenager were other young people with my chronic illness. This was a wonderful thing but after a while, I came to terms with my condition and grew disillusioned with the culture of these groups. I don’t want to tar all illness-related support groups with the same brush or slander my friends who are still part of these groups - most of my experience is with particularly vulnerable young adults. But there are groups, or cliques within these groups, which work like this:

Everything people talk about is placed in the context of illness. Every positive experience must be qualified with the cost in symptoms (probably spoons these days) – this turns a lot of positive experiences either neutral or negative; I had a lovely day today but I will now have three weeks of raging agony. Other people’s positive experiences can be celebrated but not without regret; So glad you had a lovely day; if I did half as much, I would probably collapse and die. Everything that goes wrong in life is put down to or made very much worse by illness. Outsiders can’t possibly understand.

This is a caricature, of course, and it’s very important to recognise that people who edge in this direction are not especially morbid and self-obsessed. It’s all about isolation and belonging. Folk are isolated and vulnerable to varying degrees but have found a group to which they can belong. So they cling onto that, imitating one another’s behaviour and constantly reasserting their qualifications for belonging: I am one of you, I am one of you. Did I mention I am one of you?

It’s a strong example because the common ground is very specific. However, I've seen something like this in pretty much every on-line community I've wandered into since, whether creative communities, sceptic or geek communities, political or egalitarian groups. 

Political campaign groups are particularly at risk because of the combination of passion, urgency (things must change – lives are at stake) plus the issue of public opposition. Any social media campaign will meet with dissent – Blogging Against Disablism Day has a very broad remit, more a carnival than a campaign, but still meets a few voices of derision every year. 

Campaign for something specific, something counter to the status quo or government policy and there are going to be objectors. It may even be that most people in the world basically agree with you but don't care enough to be involved - objectors care enough to let you know about it and often in abusive terms (even if it's about the faces on our banknotes). It can very quickly feel like the enemy is everywhere. This adds to a sense of isolation and increases the need to feel safe and secure within the group. 

And again, the three big difference between on-line and off-line worlds come into play:

My fingers on a keyboard. Photograph by Stephen.

Relative anonymity as well as - I think, more importantly - geographical and psychological distance allow arguments to rage. I've seen trolls, but far more often I see two people who have the same objective abandon basic civility over one small contested matter. I'm guilty of this myself. 

Someone can campaign from the moment they wake up in the morning until they go to bed at night. They might be doing many other things as well, but there’s less likely to be a set time for this activity, after which they leave it alone. Without carefully managed separate accounts and a will of steel, it is difficult to socialise while staying clear of politics. There are rows in grass roots meetings in the village hall, but everyone goes home after an hour or so. 

Having a single on-line identity means that everything feels personal. It’s more difficult to differentiate between an attack on your views and an attack on your person. And then there’s personal branding.

When I first started blogging, I quickly saw that the way to get the most hits, comments and links was to be as consistent as possible; blog about the same kind of thing, or different things but from the same angle. I resisted this, not for any noble reason around authenticity or being true to myself. It’s just that this blog very quickly became a tremendously useful vent and I wanted to  use it however I fancied.

However, there was and is - now more than ever - validation to be had in consistency. There are times when I've had a spell of writing about the same kind of thing (usually gender, sexuality or disability) and it is during these times that I get the most hits, the most links and the most retweets. This naturally drives me to do more of the same. These are also times I have felt quite lonely. After all, I am not all about disability, or gender, or sexuality. Meanwhile, people agreeing with you - worse, simply retweeting or showering you with "likes" isn't engagement. It's tremendously gratifying, it's very nice. It is, in fact, successful branding. If you're a business or someone who needs to sell themselves professionally, this is exactly what you need to aspire to in your professional life. But it's applause, not social interaction. You win fans, not friends. 

Folk always got hooked on applause and I see a lot of that. Not just blogging about the same thing, but tweeting on the same subject, backing that up with Tumblr, doing the same on Facebook. I see a lot of it in political movements, but I also see it in the way someone might tell the same joke over and over, the way some parents now keep a cameraphone between themselves and their kid, the way some people apply cynicism to everything other people care about and then feel compelled to apologise for any glimmer of enthusiasm. It's so tempting, to keep coming back to what works, but when we do that, we risk denying ourselves the opportunity to do something different; it's not who we are, it's not what others expect, we're going to confuse and disappoint them.

I strongly feel we need to avoid being one brand of person - partly for our own health and happiness, but also for the health and happiness of others. We're no longer in high school; we don't have to identify ourselves as the sporty one, the diva or the nerd. We don't need to identify our tribe, fall into line and hold on tight, forsaking all the other interesting people around. 

Believing we have the strengths that others attribute to us can be a confidence boost or it can set us up for a fall. Believing we have the limitations that others attribute to us can be a killer.

Blogging Against Disablism Day 2014 - Against "Awareness"

Do go read other contributions to Blogging Against Disablism Day 2014. 
Full image description and attribution at the bottom of the post.

There is a widespread belief in our culture that raising Awareness of illness and impairments benefits disabled people. Even if it were possible to educate the general public about every medical condition there is, this doesn't do anything to address the attitudes which cause inequality. In fact, I would argue that Awareness thoroughly supports those attitudes; disabled people are to be pitied, and if they can't be pitied, they must be hated.


Awareness is about Money.

Awareness Campaigns are primarily money-raising exercises. They raise money for charities and they provide very cheap human interest stories to fill magazines, newspapers and TV shows. Some charities are extremely worthwhile causes, but others are not - the mere association between an organisation and a group of people who need help and support doesn't mean that that help and support is forthcoming.

Meanwhile, as I've been looking around for graphics to illustrate this post, I have learned that one can buy a great number of Awareness t-shirts and accessories from companies who don't even feign affiliation to a charity. So there's money to be made all round.


Awareness reinforces a strict narrative about disability. 

It's tremendously important that disabled people tell our stories - all kinds of stories - but there are only three stories told about disabled people in our culture; triumph, tragedy or villainry. Awareness leaves the villains alone - nobody gives their spare change to help Blofeld walk again.

Instead, Awareness concentrates on the narrative which makes up The Tragedy Model of Disability:

"Keep Calm and Fight Depression"

1. Disaster strikes an innocent.
2. Our hero bravely battles against impairment.
3. The bittersweet resolution, which may be:
(a) Our hero succeeds in becoming at least slightly less disabled.
(b) Death and thus, the end of suffering.

Almost every news story and most fictional stories involving disabled characters follows this pattern. Awareness Campaigns' favourite subjects start out as brave soldiers, promising athletes or straight-A students - all the better if they are about to get married or start their dream job when they become disabled. Obviously, they have to become disabled in a way where they are blameless; for reasons that remain unclear, extreme sports injuries are fine but sexually-transmitted diseases are not.

Then they have to suffer; multiple tests, multiple surgeries, multiple experiments in alternative therapy, moments of despair (but preferably nothing as serious as a suicide attempt). And at the end, even though most subjects will still be disabled, it has to be played that they have overcome their impairment in some way. They may have defied all expectations to taking up macrame! Or they have a relationships! Or even a job!

"Losing is not an option"

When the disabled people are children, a non-disabled parent will often be cast as the hero in their place. Even last week, when a mother murdered her three disabled children in New Malden, near London, newspaper reports told this story, just hours after those children were found dead: We are reassured that the parents didn't know they carried the genes which would cause some of their children to have Spinal Muscular Atrophy until the mother was pregnant with the younger twins (Disaster strikes an innocent); the devoted mother (no quote marks) slaved away looking after her burdensome children with little outside help (Our hero battles against impairment). The children were "likely to spend their short lives in wheelchairs" but now they're dead, which is sad but not the worst thing in the world.

Quite unlike when non-disabled children suffer violent death at the hands of their caregiver - that is the worst thing in the world.


Awareness promotes a dynamic between non-disabled and disabled people which renders equality inconceivable. 

I've written before about the way that doing anything for disabled people, including normal things that family members, friends and colleagues do for one another all the time, can be framed as care and take on a special charitable status. Give your non-disabled friend a lift? That's a favour. Give your disabled friend a lift? That's care, have a medal, bask in the warm-fuzzy of your own philanthropy.

"I wear a ribbon for my hero"

Thus all interactions with disabled people become tainted with this idea of charity. Employers imagine that employing disabled people would be an act of generosity and compassion, rather than shrewd recruitment. Accessibility is not a matter of fairness, but kindness, and can this organisation afford to be kind? Governments are able to frame disability benefits and social service support as a matter of charity, discussing deserving and undeserving cases, as opposed to straight-forward eligibility.

This is a major factor in the abuse of disabled people, with disabled women twice as likely and disabled children three times as likely to experience domestic abuse than their non-disabled peers. Stand next to a disabled person and you'll be assumed to be their carer. Live with one and you'll be assumed to be a saint (see above, re the New Malden murders).

It's a common complaint from folk with chronic illness that they'll see their friends on social media sharing Awareness material, including aphorisms about the importance of loving and supporting someone with a particular condition, when they haven't made personal contact in months. But this is what happens when all interaction with disabled people is reduced to charity; you're not enjoying my company, you're giving your time to me. And if there's no praise attached, what's the point of that?


A little knowledge is a dangerous thing. 

Once I'd received my diagnosis, friends and family would take an interest in news stories about the Dreaded Lurgy. Most of these stories were human interest stories of the Awareness variety; stories about someone with the Dreaded Lurgy. A Day In My Awful Life or My Life-Plan Down The Pan - this sort of thing. I did meet one of my best friends through one such story, but hers was told with far more stoicism and grit than the others.

Anyway, these people with my diagnosis were, naturally, a complete mix. In some cases, I didn't even look like those people; the drugs I was on had made me fat, while some featured dangerously underweight women who struggled to keep any food down. Some of them described managing a part-time jobs, while I was rarely awake for a full hour stretch. Others couldn't walk or even talk, while I was relatively ambulant and nattering away just fine.

Thus, my diagnosis was gently questioned by well-meaning friends and family all the damn time. This was only sometimes skepticism about my account of things - usually the hope was that the doctors had missed something and maybe there was a cure for what ailed me.


Awareness places different conditions in competition with each other. 

"I wish I had breast cancer" - Poster for Pancreatic Cancer Action

Kery Harvey wasn’t wrong to wish she had Breast Cancer, a better understood, more operable condition with much better survival rates than the Pancreatic Cancer which would kill her, aged 24. But the advert, designed to raise the profile of the charity (there’s no information that might promote early diagnosis) is explicit about a message that many Awareness Campaigns aim for; this condition is the worst. It causes the most suffering to the loveliest people, in the most tragic of circumstances.

While there is a large degree of solidarity within the disabled community (hierarchy notwithstanding), communities built around a shared diagnosis are not always sympathetic to other disabled people. It is obviously true that some diseases are generally nastier than others, that some diagnoses are better understood than others and so forth. But, with the help of self-interested charities, illness-based communities can often lead themselves to believe that their problems are unique. Awareness promotes this mentality, pitching one condition against another for sympathy, attention, charitable donations and occasionally even government resources; I have seen on-line petitions demanding funding for very specific areas of research.

When the Robot Hugs cartoon Helpful Advice went viral with the caption “If physical illness was treated like mental illness” (not the artist's own words) it appeared in my Twitter stream on a daily basis for over a week. And every time I saw it, I despaired. People with chronic injuries and physical illnesses get advice about trying harder, thinking positive, avoiding essential medication and so forth all the time. Yes, the stigma of mental illness is undoubtedly worse. But pitching one condition, or group of conditions, against another, can cause hurt all round.

"Helpful Advice" by Robot Hugs.

The dramatic messages of Awareness Campaigns often reinforce or create new stigma.

"Who loves someone with autism?"
My guess is many people but few pandas.

The Caffeinated Autistic has a good summary with links to how, in their attempts to raise money and Awareness, Autism Speaks has described autistic people as if autism is a dreadful mask that the real "normal" children are hidden behind. This includes the now famous Youtube video where one of the board members spoke about contemplating the murder/suicide of her daughter and herself.

The insistence that mental illness is just like any other illness, i.e just like a physical illness, has helped to reinforce the idea that mental illness has wholly internal, biological causes and always can and should be cured or managed with drugs.

Attempts to promote the idea that invisible chronic physical illnesses are real, and not in the imagination of sick people, frequently use language which reinforces the false dichotomy between real physical symptoms and conditions, and imaginary mental health symptoms and conditions, further stigmatising mental illness and making it particularly difficult for people with both physical and mental health conditions.

It's your fault! If you're charged with sexual assault!

Breast Cancer is perhaps the best example of Awareness Gone Wild. In an attempt to market themselves as a fun sexy feminine product, Breast Cancer charities and companies wishing to make money out of pink things have made a fortune, but at the expense of women and others with breast cancer, many of whom are not young, thin, pink-loving white women whose main aspiration in treatment is to Save the Tatas. Barbara Ehrenreich's essay on her experiences with breast cancer is a good example of a great deal of excellent critque of the commerical tactics of Breast Cancer Awareness, which even includes a film Pink Ribbons Inc.


There's a Problem With Our Poster-Boy. 

Poor Stephen Fry. It’s not his fault; everything I've ever read or heard him say about mental illness in general or Bipolar Disorder in particular has been cautious and balanced. He has certainly dented the stigma of Bipolar Disorder or Manic Depression as something experienced by axe-wielding maniacs. However, at the same time, the strong association between the illness and Stephen Fry has very much reinforced the belief that:

• Bipolar Disorder is a condition associated with artistic genius. People with mental illness who are not artistic geniuses are still either layabouts or monsters. You can't be a regular person with average skills and aspirations and happen to have Bipolar.
• People with mental illness deserve our sympathy and respect because they are capable of massive success. Our cultural landscape wouldn't be the same without Stephen Fry, and that is why we should be cool about mental illness. 
• Bipolar Disorder manifests itself in occasional dramatic episodes but is otherwise easy to live with. Stephen Fry is an incredibly busy man, who is - as far as the public can tell - never too sick to work. When Fry attempted suicide in 2012, the public didn’t have a clue until he spoke about it the following year, by which point it was a past event; done, dusted and recovered from.

Stephen Fry quote about the one in four people who have a mental illness.

None of this is Fry’s fault - it is an entirely good thing that he gets to have a private life, and that dramatic events like suicide attempts can be talked about in hindsight and not as dramas unraveling on rolling news (also safer for the rest of us).

The fault lies in a media and a culture which generally under-represents and misrepresents people with mental illness. And people with all kinds of illness. And disabled people in general.


There's a Problem with Our Poster-Girls.

Women are more likely to develop chronic illnesses of almost all kinds. Women are also more likely to seek out others with their condition, join or create support groups, get involved with charities and campaigning. Men and others with chronic illness may struggle to find information and support which is not designed exclusively by and for women. However, when it comes to Awareness Campaigns, stories and images are dominated not only by women, but by a certain kind of woman; our culture's ideal victim.

The "Moving Mountains" Calendar sold to raise money
for the MS Society did feature a variety of women.

She's young, white and pretty. She's usually very slim and often blonde. Her impairment is the only barrier to her being a complete hotty. In fact, if she were fictional and non-disabled, she'd be exactly the sort of person who usually gets murdered at the start of a long-running television show.

Weirdly, her ubiquitous presence on any Awareness Day hasn't really changed the perception that young attractive people can't have chronic illness. That's because, in reality, chronic illness is a fairly commonplace misfortune; Awareness is about sensation; our pretty young victim's plight is tragic because it is unusual. Too unusual to say, be the young lad sitting in the seat reserved for disabled people on the bus.


There are too many conditions to ever be Aware of them all and what's the point anyway?

Pancreatic Cancer Awareness

If you see someone wearing purple or a purple ribbon it may be for ADHD, Alzheimer’s, Chiari Malformation, Crohn’s Disease, Cystic Fibrosis, Dyscalculia, Eating Disorders, Epilepsy, Fibromyalgia, Huntingdon’s Disease, Lupus, Macular Degeneration, Migraine, Multi-System Atrophy, Pulminary Hypotension, Rett Syndrome, Ulcerative Colitis and a whole range of different cancers and other conditions which I haven't heard of. And that’s before we get to matters not related to any specific medical condition, like suicide prevention or domestic violence.

"Hope - Support Epilepsy Awareness"

Presumably, you only ask the first time you see someone wearing a purple ribbon. You might not even ask why someone is dressed entirely in purple.

The question is, is there any specific medical condition that people need to know a thing about?  

"I love someone with Cystic Fibrosis"

AIDS Awareness was one Awareness campaign which worked very well. As well as going some way to address a terrible new stigma, it promoted changes in behaviour which helped to prevent a pandemic in Europe (something we often forget was perfectly possible). But HIV/AIDS was a brand new disease.

Fibromyalgia Purple Ribbon Tree

There are symptoms we need to learn about for purposes of prevention and early diagnosis, but most of these symptoms could relate to a number of serious conditions; new pain, mysterious marks on the body or blood where it shouldn't be - I once saw a list of Symptoms You Should Never Ignore include sudden blindness!

But as far as being Aware of conditions for the sake of people who live with them, what does anyone really need to know?

My neighbour is disabled with what I've heard referred to as "One of those M conditions." Perhaps Muscular Dystrophy, Multiple Sclerosis or Myalgic Encephalopathy. I speak to my neighbour, but I've never asked, for obvious reasons. Apart from realising that my neighbour has an impairment and therefore is more vulnerable in bad weather or a power cut, could there be anything, any of us need to know about his specific condition?

The idea that having medical information will improve the way disabled people are treated rests entirely on a view of disabled people as charity cases who effectively need to justify their difference with medical information before they will be treated decently. The idea that disabled people will ever be seen, automatically and unquestioningly, as equal to everyone else, becomes inconceivable if people need to know about our private experiences and medical histories in advance.




Image Description and Attribution:

1. A graphic with red background and black writing reading "Keep Calm and Fight Depression". There is a crown at the top of the graphic. By Keep Calm Studio.

2. "Losing is not an option" - white poster design, the word losing in orange with a ribbon for an o. Other lettering in black. Available as a poster to raise awareness of "any orange ribbon disease" from Awareness Gift Boutique at Cafe Pres.

3. "I wear a ribbon for my hero" - black poster with white and blue writing and a large blue ribbon to the left. Available as Pancreatic Cancer Action features a bald young white woman with some raised areas on her scalp. There is a quote "I wish I had breast cancer." in large bold writing, acredited to "Kerry, 24 #kerryswish". Below reads

"Today 23 people will be told they have Pancreatic Cancer. Like Kerry, this is what they face:

• Only 3% will survive because of late diagnosis.
• Most will die within 4 to 6 months.
• It's the UK's 5th biggest cancer killer.

Pancreative cancer has the lowest survival rate of all 22 common cancers. Early diagnosis saves lives."

There's then a link to the webside at the details of the registered charity number.

4."Helpful Advice" by Robot Hugs. A grid of six illustrations entitled "Helpful Advice". The first features a figure in bed, thermometer in mouth and a figure above them saying, "I get that you have food poisoning and all, but you have to at least make an effort."

The second features a figure with a bleeding stump where their hand might have been. Another figure is saying, "You just need to change your frame of mind. Then you'll feel better."

The third features a figure leaning over a toilet, with another figure saying, "Have you tried... you know... not having the flu?"

The forth features a figure injecting their leg, while another figure says, "I don't think it's healthy that you have to take medication every day just to feel normal. Don't you worry that it's changing you from who you really are?"

The fifth features a figure with a bleeding abdominal wound with another figure saying, "It's like you're not even trying."

The sixth and final features a figure in bed with a drip and a heart monitor with another figure saying, "Well lying in bed all day obviously isn't helping you. You need to try something else."

5. Unattributed graphic found on Facebook as part of the "Light Up Blue For Autism" campaign, featuring a soft-toy panda raising its arm and the caption, "Who loves someone with autism?"

6. Design on a drawstring bag available to buy here to raise money for the US Breast Cancer charity Save the Tatas. It has a black background with white writing which reads, "Save a life! Grope Your Wife! Save the Tatas"

7. "Stephen Fry on mental illness" possibly by rationalhub on deviantART - a poster featuring Stephen Fry's smiling face (a handsome middle aged white man with a slightly wonky nose) and the quote,

"One in four people, like me, have a mental health problem. Many more people have a problem with that. I want to speak out, to fight the public stigma and give a clear picture of mental illness most poeple know little about. Once the understanding is there, we can all stand up and not be ashamed of ourselves, then it makes the rest of the population realised we are just like them but with something extra. - Stephen Fry."

8. "Moving Mountains" Calendar Cover by Steve Yates at Derwent Photography. This photograph shows the silhouette of twelve variously-shaped standing women, some holding umbrellas, on a hill. This 2011 fund-raising calendar featured nude photographs of women with MS in the landscape of Cumbria. All the photos can be seen here.

9. "Pancreatic Cancer Awareness" purple ribbon design available as a grosgrain ribbon from Brychan's Lair.

10. "Hope: Support Epilepsy Awareness"  unattributed, found at A Dog 4 Deeds post for Epilepsy Awareness Month, 2011.

11. "I love someone with Cystic Fibrosis" graphic available free from Cool Graphics

12. Fibromyalgia Purple Ribbon Tree is a tree design decorated by loops of purple ribbon. This is available asa fridge magnet from HomewiseShopper at Cafe Press.