Contains Strong Language

Years ago, I was in a cafe listening to a conversation between a group of builders on their break. One man was telling a story about how his family had travelled to Greece to see his cousin ordained within the Greek Orthodox Church.

“My fucking cousin,” the man declared, “a fucking priest!”

As I learnt from my eaves-dropping, being ordained is a “big fucking deal” in Greece or at least it was in this particular family, who treated the occasion much like a wedding, with “a fucking banquet” and “fucking speeches”.  But towards the end of festivities, a crisis struck:

“We couldn't find my fucking cousin – the fucking priest! We look everywhere but he’s gone fucking missing in the middle of all this. And at the same time, we realise my fucking sister’s nowhere to be seen either. We look all over this fucking hotel we’re staying at. Then finally, in this big fucking dining room where the whole family is, someone thinks to pull back the curtain. And there, behind the fucking curtain is my fucking cousin – the fucking priest – and my fucking sister, and they’re, you know, doing it.”

One of the oddities of living in two households is the effect it has on my language. My in-laws don’t swear, ever. They don’t blaspheme. They don’t make rude jokes. I’m making them sound square, but there’s a lot of laughter in the house, and very little of it is ever at the expense of other people. I don't swear around them. In fact, I barely swear in their house out of earshot. Worse, I struggle to swear in writing when I'm there. 

My parents do swear, though not very strongly - mostly the B words; bloody, bollocks, bugger, bullshit. They were more careful when we were children and even these days, Mum often tries to stop herself – she reaches for Fiddlesticks! or Gordon Bennett!, but it comes out “Fiddlebugger!” and “Gordon Bollocks!”

I swear at my parents' house. I tell rude jokes. But I can't say I feel a lot more at home or more myself. I think I tell better jokes at my in-laws' where I can't always reach for the obvious. 

I once told the story of the builder, his sister and his cousin the Greek Orthodox priest in the pub. A friend then told of a man whose car broke down outside her flat. She knew cars, so she came outside to ask if there was anything she could do. Exasperated, the man pointed in the approximate direction of the engine and exclaimed, "The fucking fucker's fucked!"

Common problem with cars that age.

One day, I was in the kitchen at my in-laws' house when a bird flew in through the window at great speed. It bounces off my head, flew in a circle than crashed against the glass of the patio door as it attempted to leave. This all happened in a few seconds and it was a shock. I spoke. I said, “Goodness!”  Not even a “Damn!” or “Crap!”

(The bird was probably okay. It was alive, though stunned and it hadn't broken its neck. We put it under a bush and it did disappear - we hope it flew away.)

The other night, here at my parents’ house, a box of chisels fell on my toe – not just any toe, but the big toe whose nail has only just recovered after an eighteen month saga of infection, threatened removal, an in-growing crisis and and recovery. I said, “Fuck.” I said it a few times. But I know, had the same thing had happened at my in-laws, I still wouldn’t have sworn.

(My toe is probably okay. The next day, it was the next toe along which was bruised.)

I almost feel like it shouldn't be possible for spontaneous reactions, exclamations of shock or pain, to vary according to social context. When people live somewhere where they must speak a second language, I wonder how often they swear or curse in their mother tongue?  What does the context have to be?

When I had post traumatic stress disorder, swearing was a major trigger. My first husband used to call me shithead, shit for brains, I talked shit, my stuff was shit, I was a bitch, sometimes a cunt, I needed to fuck off, shut the fuck up or go fuck myself, and so on and so forth. If I complained about the swearing, I was being pathetic; it was just the way he spoke. He would have never used the phrase tone argument but that was the gist. But of course, tone matters. Tone is context.

“How are you doing, shithead?” said with a smile and in a friendly tone, preferably to someone who likes to be called that and is permitted to call the speaker something equally ridiculous is quite different from, “Shut up, shithead!” said in anger, even if it happens every day. And the shit is emphatic – it’s there for a reason, shithead is not the same as airhead, let along sleepyhead. It's no coincidence that someone who used this language was physically violent. 

Even my PTSD symptoms differentiated between different types of swearing. I had to adjust my reading and cull my Twitter feed of very sweary people, even people I liked and respected in other ways. But it wasn't just about the words, but the way they were used.

If I read “Bloody hell, why doesn’t [Named Politician] go fuck himself?”  

I might think it unnecessary and maybe irritating, but it wouldn't upset me. Big difference if I read

“Bloody hell, [Named Politician], why don’t you go fuck yourself?” 

This isn't just about trauma. I've been around the usage of "Fuck off!" as a warm, friendly "Give over!" almost like "Stop tickling me!" or the wide-eyed "Shut. Up." of adolescent disbelief. But unless you grew up with that, swearing in the second person can still feel like an attack. Especially in writing where there's no voice to reassure us.

Stephen was one of these poor kids who suffered that great indulgence-neglect of a TV in his room from an early age. He's also a massive film buff and you can’t really be that if you can’t tolerate the full range of the spoken word in English. He spent his teenage years travelling by taxi to hospital school, exposing him to both typical South East taxi-driver parlance, as well as the language of those classmates who were there for behavioural reasons or in one case, because they had impaled themselves while evading the fuzz. Thus, while his parents never swear, Stephen was in no way sheltered from foul language as a child. 

Yet Stephen almost never swears. He swears perhaps once a year. And when it happens, it's an earth-shaking swear.

I have pointed out that as a non-swearer, swearing would offer a little pain relief, at least in the immediate aftermath of injury. But it’s not in him. I have suggested he invents words that sound like curses for this purpose, but he is against it in principle. He doesn't even use the substitute swearwords available to him; no sugar, darn, blast or curses.

I'm not convinced this is entirely healthy. Not the not swearing, but the not even cursing, even mildly, when things hurt or go wrong. 

My swearing varies massively according to pain and stress. On a bad pain day, I can be oblivious to the amount I’m swearing, so much so that it’s disturbing to have it pointed out to me. Yet, although I'm less likely to spend time with other people on such a day, I know I still won't swear in front of anyone who might be offended. 

When I am stressed out, I become painfully aware of how much I swear. In recent weeks, our housing situation is looking to get sorted, but with no certainties and many causes of minor panic along the way. Plus there's been - there is - a family crisis afoot. I've been swearing like a trooper, I've been swearing in unhelpful ways about other people, I've been swearing in ways that would make me cringe to repeat.

And clearly, I should have a handle on this. My Granny may visit at the weekend and I won't swear in front of her, whatever happens. Burning rocks can fall from the skill and all I'll say is "Blimey!"

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.

Why I don't answer The Question

During one recent week, I was heartened to read three different articles by disabled people writing about disability in a mainstream context. Woohoo! Or woohooish. Each one began with two or three paragraphs dedicated to answering The Question. One was an article about being asked The Question, and how infuriating that is, yet the author still made sure she had answered it before she made her case.

The question is

What's wrong with you?

or sometimes, What's your condition? What's that scar from? What's wrong with your legs? Why do you use a cane? Why are you in a wheelchair? Why don't you have a job? and many variations on the theme.

I don't answer this question, not unless I have to or on the very very rare occasion I am asked by an established friend. Here's why:


It's a personal question, it may not have an answer and it tells you very little about me.

The Question is about my medical history, my body, my physical and mental health. For some disabled people, the answer may involve trauma, violence, shame, personal tragedy - it could be a fresh tragedy or it could be something someone's worked hard to leave in the past. It could involve deeply personal matters such as infertility or a dramatically shortened life expectancy. There may not even be a medical diagnosis - those things can take years, diagnoses can be revised two or three times and sometimes, someone has a combination of symptoms which medical science is yet to stick a name on.


The Question is not relevant.

When disabled people point out that their medical conditions are nobody's business, there are usually three objections from our interrogators:

1: "People are just being friendly."

No, they're not. Sometimes social interaction is hard, but do unto other as you would be done to is fairly basic. If you wouldn't like to be asked a personal question relating to your appearance, your own or your family's medical history, don't ask one.

2: "It is our business! People like me let you park in convenient parking spaces and pay taxes so you can have grab-rails in your bathroom, so we should have the right to interrogate you until we're satisfied you really deserve it."

There is a tremendous sense that disabled people are public property - something that's massively increased, along with full-on hate crime, in the last few years. This is such a bizarre reduction of how society works, akin to my demanding of random children I meet that they tell me (a) how they're doing at school, honestly and (b) what they intend to do when they grow up. After all, I let children exist, my taxes go on everything from maternity care to subsidised school dinners. I pay for the little buggers' crayons, for crying out loud!

3: "It is our business! If you have access needs, then I want to decide what you need or don't need based on a medical diagnosis I've never heard of before, rather than listening to your requests."

There's little my diagnoses - or any diagnosis - could tell a lay person about actual limitation and access needs. With chronic illness especially (though with many other impairments too) there is so much variation between individuals, the different symptoms we have and their severity, to say nothing of how these things shift over time, sometimes from one day to the next. The main reason for demanding such background information is personal curiosity. Or you know, nosiness.

Here are some similar Questions.

"Where do you come from?"
"Have you ever tried having sex with a man?"
"So, what gender were you born as?"
"When did you decide that you were that way?"

All these questions amount to the same thing: "I'm normal. You're different. Justify yourself!"

I think disabled people are much more likely to answer this question - not because we are most oppressed, but because of the nature of that oppression. I don't see anyone explaining where they or their antecedents came from before discussing the black experience of university life. I don't see anyone talking about how many girlfriends and boyfriends they've had before discussing queer representation in film.

So why do disabled people feel the need to justify our difference before we even begin to speak about anything that affects disabled people?

Some people are happy to answer The Question for good reasons.

Some disabled people don't find it rude. Some people are very open about their conditions and tell people up-front, before the question is asked. Some people have really interesting conditions. Others have conditions they really want to talk about - I had a phase of this myself in the months following diagnosis. Some conditions are better known, easier to explain and be clear about (although I know at least one person who cheerfully informs strangers of his personality disorder diagnosis - I don't know if that's brave or naive). Some people strongly identify with other people in the same boat and have condition-specific pride; deaf pride, autistic pride, etc..

All this is cool. Absolutely cool. But there are less cool reasons people answer The Question:


Some people believe the answer to The Question is the most interesting thing about them.

Our conditions are often what people talk about when talking about us; we become Bipolar Charlie or Nadia, who has MS *.  Often, it can feel that a medical condition has replaced an education or career in terms of what a person does with their day. I'm fairly sure that, when my mother talks about her daughters, she talks about her eldest who is a teacher and her youngest who can't work because she has the Dreaded Lurgy - although she will then go on to talk about what I actually do with my time. One day I will persuade her to skip the Dreaded Lurgy bit altogether.

People join illness-specific support groups which, given enough isolation, can emphasise this idea of a diagnosis as a fundamental difference between ourselves and the rest of the world; something other people don't and won't understand. We spend a lot of time with doctors, in hospitals, filling out forms, administering treatment and then simply being ill (a terrifically time-consuming business). So there are periods - sometimes years - when illness is a huge part of what we think about, as opposed to something we unconsciously work around. Thus, I think there are circumstances where the close psychological identity with a medical diagnosis is inevitable. It's just a shame that happens.


* I took a break from writing this post to read an article someone had recommended. It is in several parts but the first consists of several paragraphs about two disabled people affected by the benefits cuts. It does mention a few facts about their lives and interests, but most of the wordage was taken up with an explanation of their medical conditions and symptoms. The second half of the article opens

"Too often, the disabled are referred to as whatever illness they have, rather than as who they are."

Well, yeah.


Some people answer The Question because they think they need to justify themselves.

Disabled people do have to answer The Question on a fairly regular basis. Need medical help, certain kinds of assistance or accommodation, grants, benefits, protection from discrimination within a workplace, then there's often an insistence on answering The Question, whether or not it's entirely pertinent in the circumstances. Not just The Question, but often other questions about what a dreadful complex range of life-limiting impairments we have. And we live in the knowledge that these questions might not be enough - that while we're dealing with things that we're entitled to, rights protected by law, there's still a strong sense that we're begging to be considered deserving enough.

Disabled people are often made to feel like we are a burden on others, that we exist only thanks to the kindness and compassion of non-disabled people. So when a stranger asks, it can be easy to slip into answering mode - supplication mode - as if this conversation is just another loop we need to jump through in order to get on with our lives in peace.

Related to this:


Some people answer The Question in order to differentiate themselves from other, less acceptable kinds of disabled people.

Is your impairment heroically, or at least honestly, come by? Are you able to work and play sport? Are you in perfect mental health? Maybe you're often spoken to like an idiot when, in fact, your impairment has no effect on your IQ - perhaps you're actually smarter than average? You must be so proud! You might also want to let others know that you are not short of a good impairment story, are a slim non-smoker, have a respectable diagnosis, are physically fit and independent and, of course, are not some decrepit old biddy.

Of course, there's no reason for any disabled person to be looked down upon, treated like an idiot, doubted or dismissed. We don't solve that sort of thing by making sure that bigots know that we, as individuals, don't deserve this. Nobody, anywhere, deserves that.


Some people answer The Question because of Awareness

We can change the world by telling our stories. Tell your stories! However, we live in a culture where Awareness - a word which is mostly used to increase the profiles of charities, provide cheap and tragic human interest stories for the news media and make ordinary, well-meaning people feel like they are making a difference - is seen as a straightforward, unquestionable good.

Information about a person does not equate to respect for them, especially when

1. It's the first piece of verbal information a person has about them and
2. Our cultural responses to disability tend to range across sympathy, suspicion and fear.

The fact that someone who hardly knows me is asking this personal question suggests that their respect for me is already in doubt. I'm not going to increase their awareness by giving a clear and comprehensive answer. I am only going to confirm their privilege.

(Another day, if you're good, you'll get an epic rant on Why Awareness Campaigns Do Far More Harm Than Good To Folks Affected By An Issue Whilst Making Other People Feel Better).

Related to this, read Sarah's On Not Explaining Yourself or Your Children To Strangers


The Question is part of a whole conversation I don't want to have.

This can be heart-sinking stuff, the point where you're suddenly being told that your doctors are mistaken, you can't have the condition you've been told you have and what you have could be cured with homeopathy. Or the conversation can descend into an interrogation about your medical history, tests carried out, treatments received and so forth.  And here's this person, who hardly knew you a few minutes ago, and now they know all about one small but deeply personal aspect of your life and nothing about who you are.

This is not going to be the beginning of a beautiful friendship.


Most people don't ask The Question.

They really don't. It's not normal. It's a power thing*. Not an evil sadistic power thing, but one that goes,

Here is a rare opportunity where I'm allowed to ask a really personal question to a stranger and pretend it's because I care or somehow need to know for their own good. Let's go for it! 

The more confident I have become, the less I am asked. I am more likely to be asked while in certain company; around people who respect me completely, and don't make any issue of my impairments or access needs, other people won't ask.

This is no advice for people who don't want to be asked - I think younger people (like under 25) get it worse than anybody, anyway - but it proves the point; this is a power game, microscopic and unthinking, but it is perfectly okay not to play along.



* Children ask but they have different expectations - what they really want to know tends to be, for example, why anybody might use a wheelchair. They don't want to hear about diseases. They ask "Why are you sitting in that chair?" and consider "Because my legs don't work very well." a sufficient and informative answer. Coincidentally, it's the same answer I give the grown-ups.

Blogging Against Disablism 2013: Blamelessness

The first duty of a disabled person is to be blameless.

In the Ipswich Star last week, a lady called Sarah Ashford spoke about the terrible situation the UK government's Bedroom Tax has placed her in;

“It’s a vicious attack on the most vulnerable people in society, especially somebody like me who didn’t have a choice to be born disabled. I was a breech birth back in 1964. I should’ve been born by caesarean and I should’ve been a normal baby.”

It's not in any way Ashford's fault that she is forced to speak like this, invoking the events of fifty years ago to prove that she is not to blame for her impairment. So much mainstream discussion of disability - especially the effects of austerity cuts - hinges on this language, this need to demonstrate that the people effected are worthy of charitable treatment. Words like innocent, genuine and victims pepper even the language of some disabled activists, although the implication is quite clear: there are those of us who are innocent victims of circumstance and there are those who brought misfortune upon themselves.

..........

Hideous! A pale-skinned  foot with
a heavily bandaged big toe.

I'm just finishing a second course of antibiotics for gruesomely infected toe. It's not painful, but it's been disruptive and draining and as of writing, it is still infected. Before the cause was established, I was variously asked whether

• I had cut my toe nails too short.
• I had let my toe nails grow too long.
• I hadn't rinsed my toes when washing.
• I hadn't dried my toes after washing.
• I had let my feet get too hot.
• I had let my feet get too cold.

Or, most ironically, given my circumstances,

• I had been walking about in impractical ill-fitting high-heeled shoes. 

Some of these suggestions were made by family, others by medical professionals. I was so relieved when finally I saw a podiatrist, who explained in CSI-style detail that I had badly stubbed my toe (she could tell the precise angle it had happened at and everything). 

It's ridiculous I should feel such relief.  Any other cause would have been just as accidental. I struggle with washing, drying and maintaining a stable temperature, and poor co-ordination makes my nail-cutting decidedly inexpert. The podiatrist said this long winter has brought about something of a chilblain epidemic. This stuff happens to people.

But I know my responsibilities. I have to be trying my best, to be as healthy as possible. I have to do all the right things, and be seen to be doing all the right things, to avoid relapse, infection or complication. So none of it is ever my fault. Other people can afford to make themselves vulnerable in small unwitting ways, but not me. Any infections I get will be despite my very best efforts.

Other people have it even worse. Some years ago, I was awkwardly introduced to a friend of a friend who had my condition, and believed that she was improving with the help of some extremely expensive, extremely dubious alternative therapy. Her parents were paying ten thousands pounds a year - much more than my annual income - on these bizarre potions from a man who had convinced her that she was now cured but she had to keep taking the potion and seeing him regularly because her body hadn't let go of all her symptoms (or, in fact, any of them).

She was a very difficult person to speak to, as she thought everyone should be doing the same. 

She said, "You've always got to be trying something to get better. Otherwise, you've given up."

.....................

We've developed a morality around health and healthy living to rival previous generations' interest in other people's sex lives. Food, which should be all about fuel, nutrition, social activity and sensual pleasure, has acquired the language of sinfulness and virtue; this devilish chocolate cake, this goody-two-shoes salad. People sometimes boast about doing physical exercise they actually hate, in much the same way a Medieval penitent might have celebrated how very very itchy his hair shirt was.

The wages of sin are not only death, but illness and disability in the run-up.

There's a get-out clause, of course, and that's if you can stay healthy, looking healthy. You may still boast of your efforts to steer clear of those satanic carbs and to practice Zumba like Saint Francis of Assisi, but as long as you remain non-disabled and slim enough, it's all hypothetical. It's all a bit of a joke really if you eat nothing but pizza and cigarette smoke. Only if you're disabled or fat is an adult likely to get earnest advice about diet, exercise, drugs and getting enough fresh air and sunshine. And since some of that advice will contradict (carrots are a panacea; carrots are a poison), we can never get it right.

It's particularly hard for disabled people to make healthy choices, let alone be seen to make healthy choices. Pain and distress can make avoiding drink, cigarettes and drugs more difficult. Many prescription drugs are fairly bad for you, especially long term; it's just that in the balance, their effects are preferable than the alternative. Digestive problems, poor care, poverty, allergies and intolerances mean that disabled people often have diminished choices about what they eat.  Poor mobility and metabolic problems mean disabled people have less choice how much weight they carry. Physical impairment, as well as poor access to gyms and swimming pools, social anxiety and the reasonable fear of exposing one's body to a world that has declared it substandard, are all barriers to exercise.

Yet despite all this, we are under the greatest pressure to try. To try and do the right things. To be seen to be doing the right things.

...............

Obesity is a very popular subject for moral panic. It's supposedly about gluttony, an old-fashioned sin and one we're all vulnerable to, because we all have to eat and most of us enjoy it. It's also about beauty standards, or their opposite and the thrilling opportunity - so rare these days - to judge others by their appearance. And then it is about health; people not looking after their own health, which is, apparently, a sin against us all.

This, despite the fact that half of us are overweight, the population overall continues to live longer and healthier lives.

In her post Chronic Illness, Diet & Food, Em describes about how, faced with her particular collection of complex physical and mental health issues, her doctors prefer to focus on her weight:

"I've hit a point where I'm too tired to fight it any more. The crushing pressure has become too much and given my other health issues it's just too much extra for me to keep battling on against. I have grudgingly agreed to see the local "Weight Management Services". Not because I want to lose weight but because I don't want to spend over half of every appointment I attend talking about my size."

We know our responsibilities. We have to be seen to be trying our best. We have to be blameless.

.............

The focus on the innocence or responsibility of disabled people removes the need to consider the physical, social and political barriers which set artificial limitations on our lives, above and beyond the problems our impairments cause. We are either individually responsible for our limitations, for our worklessness, for our difficulty getting up stairs or staying awake. Or we are the innocent victims of shocking and terrible events to be pitied, cried over during telethon evenings and forgotten about.

I think of this when people question our numbers. The World Health Organisation says we are one in seven. Both our Prime Minister and our Minister for Disabled People have both stated their intuitive disbelief about the number of people legitimately claiming disability benefits (much much less than one in seven). Last week, Ester McVey stated;

"Only three per cent of people are born with a disability, the rest acquire it through accident or illness, but people come out of it. Thanks to medical advances, bodies heal."

Only people who see impairment as an uncomplicated individual tragedy would be so anxious about the numbers. Because great personal tragedies, unthinkable, unsolvable, life-sucking tragedies - the type where you think, How do people go on? are thankfully quite rare. Every day bad luck life events? Really common. People fall and damage their back forever. People get an infection and never recover (hopefully not a toe infection!). People have bad experiences and are left with mental scars. People's own bodies and brains rebel against them. It sucks. Folk have to grieve. But then we try and get on with life.

And then we hit fresh barriers. The built environment, systems, prejudice, media representation and public attitudes. And the responsibility, ever to show ourselves to be innocent in all this.

Because it's never anyone else's fault if the world is built for strong legs, strong sight and hearing. It's not anyone's fault if someone is stared at, sometimes shouted at, whilst going about our daily business, vulnerable to abuse, discriminated against at every turn. It's not anyone's fault if we find that people like us are demonised in the press and in fiction, and that those messages slowly but surely sink in, changing the way in which we understand ourselves, forcing us to recount our medial histories and prove ourselves blameless.

These things are all tragic accidents.

The Language of Disability (2013)

This is an updated version of my 2008 post The Language of Disability. As before this is just me explaining the different terms as I understand them and may not be all that comprehensive. Where I express my opinion (which I'm going to), I don't pretend to speak for anyone else.

Whilst I frequently harp on about language and its importance, I am always alarmed when discussions come to a standstill over a simple word or phrase. This is why each Blogging Against Disablism Day, we have asked for a Language Amnesty; discussions of language are welcome, but we need to bear in mind that we're all coming from different places (quite literally).

Whether language is correct or incorrect depends entirely on what the speaker means to say. So the language of disability hinges on what people understand disability to be. The main controversy being

Disabled Person vs. Person with Disabilities

The preferred term generally hinges to on (a) geography, (b) identity politics and (c) a person's particular medical condition or impairment. And, unsurprisingly, a person's identity politics is likely to be influenced by both geography and their particular medical condition or impairment.

Alexander Pope, described as a hunchback
and a cripple.

In the United States and Canada, person with disabilities or person with a disability is generally preferred. On-line, these are sometimes handily abbreviated to PWD. There, disability has been traditionally understood as something that is wrong with an individual; a medical condition, an illness, an injury, a sensory or intellectual impairment. For this reason, there are groups of people who wish to divorce themselves from the label. Some Americans with autism or deafness, for example, argue that their condition is not a disability, because they do not perceive it as any kind of problem.

Because disability is something that belongs entirely to the individual, it is correct to use this "people first" language. In this context, the difference between person with disabilities and disabled person is a bit like the difference between vase with a break and broken vase. It is also far more appropriate, for example, to describe someone as a person with depression than a depressive person. Since depression (or any other condition) might be the disability in this context, person with a disability makes total sense.

In the United Kingdom, disabled person is more often preferred. Whilst not everyone understands or agrees with the politics, the reason this term has been advocated is because of a way of understanding disability called The Social Model of Disability. This asserts that there is a difference between those limitations we experience because of medical conditions, injuries and impairments and those limitations we experience because of the artificial social and physical barriers we experience in society. Only this latter group of limitations may be called disability; it is, after all, the only thing that we all have in common and the only thing we have any hope of changing.

Many people agree that the limitations that disabled people face arise from these two different sources, but this use of language remains somewhat radical, even thirty years after its conception. What people tend to hear is "It's all society's fault and if there were only a few more ramps about, we wouldn't have any problems."

There will always be some people who have difficulty doing some things, and some of us will always have unpleasant physical, cogntive and emotional symptoms to contend with however society might improve. However, people who take this position simply don't call those problems disability. And because disability is something people experience as opposed to something that belongs to them, "disabled person" is preferred. It is a political status, very much like being queer or black. And as with those terms, a small minority of people prefer to use Disabled with a capital D.

It should be noted that not all British disabled people know of, let alone understand or subscribe to the Social Model, and of course most disability activists and academics in the rest of the English speaking world are well acquainted with these ideas at this point. Many people use both terms at different times. But that's your basic difference between the two terms, as I understand it.


Other Terms for Disabled People

Often attempts are made to take the sting out of the concept of disability. Dis- is, after all, a negative prefix and disabled is often used in other contexts, such as computing and electronics, to indicate that something is completely non-functioning. What's more, because of our negative cultural attitudes towards disability and disabled people, some people just don't want to fall under that label.  In the UK, many of the campaigners against recent cuts in disability benefits and services, prefer to describe themselves collectively as sick and disabled or spoonies (after Christine Miserandino's Spoon Theory). Throughout the world, there are some deaf sign-language users (often writing Deaf with a capital D) who do not consider themselves disabled.

Some people argue that if society sees disabled people as useless and dependent, then the solution is to use another term. We should "see the ability, not the disability". Others even argue that "disability is a state of mind" and last year, around the Paralympic Games, a famous poster declared The only disability in life is a bad attitude.

Personally, I don't see a problem with the negative term; whilst it is by no means the worst thing that can happen to a person, disability means being treated differently and therefore is a disadvantage. However, several attempts have been made to find a neutral or even a more positive way of describing our situation. Most of these are euphemistic, with the rather odd exception of handicapped.


Handicapped / People with Handicaps

Lord Byron, who was described as being lame.

Handicapped has a very bad name in the UK, and seems to be losing popularity elsewhere. Part of this is due to the myth that handicapped comes from begging, "cap-in-hand", from a time where the only conspicuous disabled people had to beg for a living.

This isn't true. "Handicap" is a common word in horse-racing, golf and other sports and originates from a medieval gambling game "hand-in-cap" which involved drawing lots. There is a full explanation in the 1911 Encycopedia Brittanica, composed before handicap was first used in the context of disability.

Some people who take objection to words beginning with D, see handicapped as a positive label. In sports, a handicap is a disadvantage imposed on a superior competitor in order to make it a fairer game or race. So if we are handicapped, well maybe we're just brilliant and this is the universe's way of leveling things up for everyone else. A rather fanciful but undoubtedly positive notion.

Unfortunately, experience has put me off this term. Because it fell out of favour long ago, sensitive people tend to avoid it, regardless of whether they understand the objections against it or the etymological arguments. I'm afraid its usage has been accompanied by ignorance and prejudice often enough that I cringe every time I read or hear it. Which is a shame.

Modern Euphemisms for Disability

Florence Nightingale was described as
an invalid

There are a number of euphemisms used when talking about disability, especially - though not exclusively - where disabled children are involved. This is understandable; if the world sees disabled as broken and useless, then children with this label are in danger of growing up with some pretty negative ideas about themselves. Many parents and educators try to protect them from this with more innocuous language.

I have great sympathy with this, but I'm doubtful about its efficacy. When someone is determined not to say what they really mean, they don't always notice what they're really saying. So to speak.

Differently-abled

Some disabled people's abilities are in no way inferior to those of their non-disabled counterparts, but merely different. The wonderful Institute for the Study of the Neurologically Typical demonstrates rather brilliantly, as well as everything we saw at last year's Paralympic Games.

Unfortunately, so long as different is perceived as an issue, it is a disadvantage. Imagine if someone described people who weren't white as differently-coloured or people who weren't men as differently-gendered. This is by no means neutral language.

And that's only if we give the phrase the benefit of the doubt. If we take it literally, everybody is differently-abled and the phrase means nothing at all.

Physically Challenged, Intellectually Challenged etc.

The language of challenges has often been used to replace language which was felt to condemn. For example, replacing delinquency with challenging behaviour, or poverty with economic challenges. Yes, I know it is a common tool of the fork-tongued, but it's not always complete nonsense.

However, our impairments are not challenges. A challenge is necessarily something which may be overcome, whereas the status of our bodies and brains is pretty much immovable. These terms also nod to the triumph over adversity narrative which is as problematic a stereotype as anything that disabled ever threw up.

Special, Handicapable etc.

These terms go beyond an attempt at neutrality and try to make disability something positive. I've never actually heard a real person use the word handicapable out loud, but it is used. Special, meanwhile, is widely used, particularly in education. Special Educational Needs can encompass a massive range of impairments, from severe intellectual impairments through giftedness to mobility impairments.

Seahorse wrote an excellent piece about special and the way that teachers and non-disabled children can react to this label. Also on the BBC Ouch Blog, Nicola has also written about the way teachers reacted to her, destroying her confidence with the best of intentions.

The word itself doesn't cause this patronising, sometimes exoticising attitude towards disabled people, but it undoubtedly backs it up. I'm afraid I have little good to say about this word and similar variations on the sentiment, but then I guess that being regarded as special and being regarded as equal are mutually exclusive.

Toulouse Latrec was described
as a midget, even though he was
over five foot tall.

Reclaimed Terms

Informally, many disabled people refer to themselves and one another using terms which have historically been used to insult, oppress and patronise them. The main two examples are gimp which gives me images of black patent leather and chains but is very popular in the US and crip from cripple. Other examples include freak, mutant and more impairment-specific terms like nutter and spaz.

Many disabled people, having had a period of coming to terms with their disabled identity, have a phase of using these words a lot, reveling in both the act of subversion and the sense of group-identity they provide. However, others are genuinely upset by them, especially those with raw memories of these words being used in malice. I tend to the view that as with all humour (because this is largely about humour and fairly dark humour at that), there's a time and a place.


Disablism vs. Ableism to described Disability Discrimination

Both these terms are neologisms to describe disability discrimination, and much like homophobia, don't make a great deal of etymological sense. They are imperfect - disability discrimination is more accurate, but more of a mouthful. The reasons different people use these terms are very similar to the reasons people use disabled person or person with disabilities.

If disability is an individual lack of ability, i.e. we are people with disabilities, then ableism is more accurate because it is discrimination between people of different levels of ability. If we are disabled because of the limits placed upon us by society, then disablism is more accurate, because it is discrimination against disabled people. This is why I called BADD Blogging Against Disablism Day, because Blogging Against Disability Discrimination Day seemed too long, I don't believe the abilities a person has are wholly independent of the society in which they live and to be honest, I had never heard of ableism back in 2006.

Lisa wrote an excellent post for Blogging Against Disablism Day 2008 about Ableism vs. Disablism.


Terms for people who are not disabled. 

The traditional term is able-bodied, sometimes temporarily able-bodied (or TAB) to encourage the idea that anyone could become disabled in the future (although strictly speaking, most people won't). Many people reject able-bodied because disability is not about bodies, and even when people understand disability to be about individual impairments and limitations, some of these impairments are not physical and even some of our impaired bodies are extremely fit and capable of remarkable feats in sport or dance.

It may be appropriate to talk about able-bodied people when talking specifically about people without physical impairments, but able-bodied as an antonym for disabled is problematic. People with physical impairments sit at the top of the disability hierarchy, and the use of able-bodied perpetuates the idea that the only real disabled people have obvious, usually visible physical impairments; a missing limb, a spinal cord injury etc.. People who pass judgement on those using disabled parking spaces will often say, "The driver got out and they were perfectly able-bodied." as if that's a judgement you can make on sight.

People who use person with disabilities tend to prefer to use person without disabilities and people who use disabled person tend to use non-disabled person. Some people have objected to the use of a negative to describe the majority of people, but we do this for several majority positions - being non-Muslim, for example, or a non-smoker.

Slang terms for non-disabled people include variations on Normals, Normies, Normates etc. (usually used in derision about the sort of people who would catergorise themselves as normal in discussions of disability), Walkie-Talkie-Types and Uprights. My favourite was a suggestion by my late friend Jack Pickard who identified himself as disability challenged. 

Some Things We Could Actually Do To Prevent Rape

This post discusses rape as well as what we can do about it. Be warned.

There are only two prominent messages we hear about how to prevent rape; don't get raped and don't commit rape. Police campaigns as well as horrendously clumsy statements by police and politions regularly attract controversy for their implicit and occasionally explict victim-blaming; the suggestion that if women took steps to avoid rape, it wouldn't happen. This is a problem. I don't need to explain why.

But telling men "Don't rape!" is also fairly futile, for three very siginificant reasons.

1. The vast majority of men are neither rapists nor potential rapists. As someone who has never downloaded an illegal film, bought or borrowed a pirate, I feel mildly insulted having to sit through the rowdy anti-piracy warnings at the beginning of rented DVDs. I imagine being told not to rape is a bit like that, only you know, about rape.
2. Men who commit rape are extremely unlikely to call it rape. If you want to identify rapists among survey respondents, you phrase it differently. Rapists generally regard real rape as something a notch or two worse than the rapes they have committed.
3. Some men are the victims of rape and not all rapists are men. This isn't merely important in terms of But what about men?! but (a) these victims matter (b) the model of rape as an inevitable consequence of straight men's sexuality and something women have to protect themselves against is at the heart of our problem with rape. 

So, what can we do to actually tackle rape as ordinary folk?  My attempt to answer this question is edging toward epic, but only because I feel very strongly about this.  It would make me very very happy if others came up with better ideas.


1. Look after your friends and don't mind your own business. 

While women are in much more danger of sexual violence, men are more likely to be injured or killed in other forms of street violence. So where late nights and drink is involved, everyone needs taking care of. When out at night, pay attention to where your friends are, who they are with and how they are doing. If any friend is

• extremely drunk, unwell or otherwise vulnerable 
• receiving unwelcome sexual attention 
• receiving sexual attention from someone with an evil moustache or something else that gives you the willies 
• paying sexual attention to someone who seems uncomfortable, or is themselves very drunk, very young etc. 

then simply stay with them or make sure another trusted and vaguely sober person stays with them. 

There is a limit to that, of course; if your friend actually tells you to go away, then you need to do so, but by that stage you'll have at least dropped the hint that you feel something is not right. There's no need to get all white-knighty and tell your friends how to behave, but exchanging our instincts about new people and situations, “I just don't like what's happening here.” is perfectly reasonable and one of the main advantages of being social animals.

 If you're wrong, the very worst that can happen is someone tells you to bugger off.  If you're right, you could save your friends an awful lot of trouble.


2. Encourage others to trust their instincts when it comes to creepy and inappropriate behaviour.

To the greatest extent, our culture teaches us not to trust ourselves when it comes to unwanted sexual attention. Then, having convinced ourselves we have a legitimate concern, we talk to other people about our feelings and are often told to question them further; Are you sure it was meant that way? Are you sure they weren't just being friendly? Are you quite sure they meant to touch you? You should take it as a compliment. You shouldn't read too much into it. And so on.

This is a disaster.

Nobody is entitled to anybody else's time, energy, attention, company, friendship or anything else. No matter how drunk, lonely or socially inept a person may be - no matter how funny, popular or decent they may be regarded by others - it is perfectly okay to say, "This thing you're doing makes me uncomfortable. Please stop it." and "You're making me uncomfortable. Please leave." and it's okay to respectfully remove yourself from their presence and have nothing more to do with them, with or without explanation.

Encourage your friends. Support their decisions to avoid people who make them feel uncomfortable. When they question themselves (and they often do - my mother thought she was being unkind to change the time she went swimming to avoid a regular at the pool who made sexually explicit remarks about her*), reassure them that it is more important that they feel comfortable than anyone else - even another trusted person - has access to them. Even if they are completely over-reacting to some poor hapless person's clumsy advances, acting on their intuition this time is excellent practice for the time when it's not an over-reaction.

I had written this bit when the wonderful Captain Awkward and the Awkward Community covered this issue better and more thoroughly than I ever could. Part of this obviously has to be


3. Exercise zero tolerance towards sexually aggressive people.  

Sometimes, people make genuine mistakes with flirtation and other times, innocent behaviour happens to press someone's buttons.  But there are limitations to this, which really ought to be obvious to everyone. Obvious examples include unwanted touching, spiking a drink, making sexually explicit remarks out of context, joking about sexual coercion (see below) and anything if it is repeated after someone made it clear they felt uncomfortable.

When a man oversteps this mark with a woman, other women are often nervous of cutting him off because they don't want to seem over-sensitive, uptight or hostile to male attention**.  Other men are nervous of going against the brotherhood, of failing to laugh off or empathise with their comrade's actions. When a woman is creeping out a man, both victim and perpetrator become a joke; my family laughed about the drunk woman who'd repeatedly tried to kiss my reluctant cousin because women aren't supposed to be sexually assertive and men are supposed to be up for whatever comes their way.  In my limited experience, gay and lesbian creeps are treated with less tolerance, except within scenes where - like the kink community - the defensiveness of the community as a safe, tolerant and funky place can silence members who have a problem.

Not only are people who violate other's boundaries in small ways very likely to violate them in much bigger ways, but people who cross these moral lines are unlikely to restrict themselves to this particular kind of bad. Often people tolerate creeps in their social circle because they themselves are immune to their attentions. But someone who doesn't care about not intimidating someone they find sexually attractive is unlikely to care all that much about not being an arsehole, in myriad other ways, to someone who considers them a friend.


4. Give all young people the same information about personal safety.  Don't tell boys or girls that their sexuality makes them dangerous.

As a girl, I learnt that I needed to be afraid of rape. Girls start receiving sexual harassment on the street very early on, and by the time a few of us had been shouted at, groped, followed home etc., we began to exchange ideas about how to defend ourselves if we were actually attacked. This now amuses me really; a can of hairspray and a lighter will make a rudimentary flamethrower but you need both hands and about thirty seconds longer than you probably have to fend off an attack. But we understood that we faced this threat. Anyone who thinks that women don't know the danger they are in is quite wrong.

At the same time, entering into adolescence, we understood that there was a demand on us to be sexy which we had to balance up with this risk of rape – dress too modestly and you're not sexy, dress too sexily and you might be raped. Even in the twenty-first century, a lot of the discussions around the sexualisation of young girls hinges on the idea of children being in danger of giving off sexual messages to men, as opposed to kids adopting a value system which is going to make them unhappy. When I was a teenager, bridging tomboy to hippy, I thought I received a lot of sexual harassment because I was tall and I had big breasts. In fact, I was told that men must think I was older than I really was. So it was all about me, and things I couldn't help about myself.

Nonsense. I was in my primary school uniform when I received my first sexual harassment from adult men. Mature looking or sexily-dressed children don't confuse men. Sexual harassment is an abnormal behaviour, and the people who do it operate abnormally; children are vulnerable and the kind of men who shout lewd remarks or molest women in the street and on public transport look for vulnerable-looking women, including children, whether they are wearing high-heels or trainers.

So girls should not receive dynamically different messages from boys about safety on the streets.
All young people need to be taught basic self-defence and to be given basic advice about travelling in groups, not drinking to a point of incapacity, avoiding certain places late at night, trusting and sharing their instincts about people and situations, only using registered cabs and so on. There is no evidence that anyone's clothing effects their likelihood of being sexually assaulted, so nobody should receive any advice about that.

Girls are much more likely to be subject to sexual harassment, but as it can happen to boys too (as well as other forms of harassment, e.g. racist, homophobic and disablist abuse) and strategies for dealing with this are much the same whoever you are. A culture which endlessly lectures girls on how dangerous there lives and bodies are but implicitly assures boys that no harm can come to them and there's never any need for them to run away, fails everybody.



5. Encourage a culture where everyone gets to say "No" without negative social consequences and respect a "No" whenever you hear one. 

At primary school, a teacher I didn't know accosted me in the corridor and asked me to run an errand. I didn't fully understand what was being asked of me – it was something to do with putting a dinner tray somewhere where it would be washed up, but I didn't know where she meant and I was anxious about getting in trouble with my own teacher for being late. So I said that I didn't want to. I had no idea how rude that was; apparently, it was the most shocking insubordination this teacher had ever encountered and what followed was the single worst telling-off I received in my entire school career.

During an early experience of sexual abuse, I actually said, with a forced laugh, “What about consent?”. This says a lot about my socialisation. I was desperately trying to work out the code that would make it stop. I had tried, “I don't think I want this.” and “I really don't think I want this.” Even when I was in great pain and crying, I still reached for, “Please can we stop this now?”

I don't believe that this happened because I didn't know how to say “No!” in a firm and forceful manner - I've never met anyone who had such problems with nuance that they confuse, “I don't think I want this.” with “Yes!” or even “I'm not bothered either way so do as you feel.”  But “No!” may well have been useful and I simply didn't have it. I don't even have it now. I probably have it for a stranger jumping out of the bushes, but for anyone I know well, like or respect on any level? Probably not.

This is partly about gender, although I know men who don't have “No!” and women who do. Rebelling against authority, to some extent, is part of our cultural narratives about how boys become men. They get to say “No!” to parents, teachers, maybe even the law, at least for a short time, in order to assert their masculine individuality. Culturally, teenager girl's rebellion is almost always framed as defying one's parents by accommodating the needs of one's male peers, putting out, rather than asserting one's own sexuality or non-sexual aspects of identity. The adult version of that telling-off I received as a child is being called a selfish bitch, a cock tease, a frigid dyke and so on.

However, it's worth saying how tricky it can be for boys and men to say “No!” in a sexual context, because of the idea that a real man, whether straight or queer, is preoccupied with and available for sex with any marginally attractive person. This idea feeds into the idea both that all men are potential rapists struggling to control themselves, as well as the idea that, immune from the possibility of unwanted sexual attention, men cannot be raped. One of the disturbing aspects of the otherwise hilarious Cosmo's 44 Most Ridiculous Sex Tips (this remains one of the funniest things I have read this year) and other “sex tips” from women's magazines is the number which don't involve even looking for basic clues as to whether a male partner might, at that moment, enjoy being groped, ravished or even physically assaulted as part of an experiment.

Which brings me onto


6. Practice, Discuss and Teach Your Kids About Enthusiastic Consent

Enthusiastic consent is the principle that great sex means ongoing positive communication between parties; you check with your partner and express your own enthusiasm (with words, noises, touch, gestures, eyebrow code etc.) at every stage. You don't have sex with someone just because they want to, you feel obliged to, because they've nagged you or sulked about it or because it gives you something to do with your hands while you work on that difficult formula. You don't have sex with someone who you suspect doesn't feel like it or seems uncertain about how they feel, or is very tired or drunk or otherwise vulnerable. You don't assume that the other person's willingness to be with you in one context (e.g their presence in your bed, their kissing you, their performing certain sexual acts on you) means that the other party is up for anything else that crosses your mind. You ask. You respect their answer. You expect the same from them.

Practicing enthusiastic consent isn't merely about being a considerate lover or avoiding doing something sexual that wasn't entirely welcome. You're likely to be in a much better position for managing your reproductive choices and, outside a lifelong monogamous relationship, it also helps protect your partners and their future partners by setting a precedent.

This does warrant discussion because (a) this isn't yet a dominant model of how sex should be in our culture – it certainly isn't what we see in the films, in Men's or Women's Magazines, let alone porn - and (b) some of us struggle with how to practice this, because of programming and personal issues around sex. What if talking out loud is a turn-off for a partner? What if you're doing something that renders eye-contact impossible? What about times you do something sexual for someone because you love them even though it's not really your thing? All this stuff is resolvable, but the principle matters and quite obviously, one's chances of having better, more mutually-fulfilling sex rocket compared to the model where one person (usually a man) initiates, everything just happens and both parties hope for the best.

My top tip: Being British means talking out loud about sex is almost impossible without giggling - just now I'm recovering from the effect of having put the words sex and rocket next to each other in the same sentence. Reading and participating in written discussions, both public and private, is much easier than sitting around with friends and saying, “So, you know when you really fancy the thing with the bubble wrap and the hedgehog costume, but your partner's busy reading Ovid...?”


7. Use The Word Rape To Describe Rape

One of the big problems we have even talking about rape is that our culture has an ideal model for the crime which (roughly) features a virtuous young single woman walking along in daylight when an armed stranger leaps out from nowhere and drags her into the bushes. We consider a rape a crime which necessarily

• results in significant physical injury 
• results in long-term trauma with immediate effect 
• results in a very specific mix of rational behaviours (e.g. reporting the incident to the police immediately) and irrational behaviours (e.g. being very upset all the time, refusing to leave the house and taking a vow of chastity). 

There are few other crimes when we question whether wrong-doing has taken place on the grounds of the victim's reaction to events - “All the evidence suggests your husband was brutally murdered, but you're now eating normally and you're able to tuck your children in bed at night without breaking down in tears, so this 'murder' can't have been as bad as you make out.”

Some rapes are much worse than others, involving more violence, greater fear of death, more than one assailant and so forth. This doesn't mean that other rapes are not serious or not actual rapes. Often, victims struggle to use the word rape because they don't feel what happened was quite bad enough and because they are deeply invested in avoiding any drama. Dissociation is a common reaction to the shock of an assault, which can mean that, on auto-pilot, the victim is sociable and friendly with the rapist in the immediate aftermath. Together with domestic violence – of which rape is often a feature – victims often see a choice between carrying on with things as they were and getting back to normal as soon as possible, or else identifying as a victim, condemning their friend/ lover/ spouse/ family or community member as a rapist and disrupting every aspect of both their lives.

So often accounts of rape begin, “I wasn't raped, but this thing happened to me once where I was forced to have sex against my will...”

This isn't victims' fault, and nobody should be pressed into using language about their own experiences which they don't feel comfortable about.  However, the rest of us need to get this right.

We generally struggle to use the word rape or even sexual assault when it is appropriate. The term “had sex” is overused in reporting of sexual crimes, even when discussing the abuse of young children. Julian Assange is currently suspected of rape, but the word is rarely used when discussing his case, regardless of anyone's stance on his as-yet-uncertain guilt.  In the coverage of an upcoming film about Mike Tyson, I've heard reference of “his time in prison” but not the fact that he was put in prison for rape (which in most minds, is towards one end of the huge spectrum of things a person can be imprisoned for). I've even seen film reviews that refer to "rough sex" when the only sexual content is an unambiguous rape.

I don't believe that this is because people don't know what rape is.  I just think we're massively squeamish about the word, like we are about some anatomical words - rape is perhaps a word we wouldn't use in front of our grandmothers. But this is part of the reason why people can commit rape and frame what they do in the language of say, men's magazines. If we consistently used the word rape to describe any time someone has sex forced upon them, it would make it far more difficult for rapists to rationalise their future crimes.


8. Avoid humour around rape and sexual aggression.

Many jokes about rape and sexual aggression muddy the water about the acceptability of these behaviours.  Sure, people laugh because these things are shocking to say and hear, but they are rendered less shocking by the saying, hearing and laughing. Jokes don't make people rape, any more than racist jokes make white people go out and beat up black and Asian people.  However, I guarantee that rapists, like violent racists, are much more comfortable in an environment where the joke is on the victims of their violence.

Meanwhile, I think this saga, which continues into the comments, demonstrates how shocking it can be to people who consider themselves harmless and decent to realise the hurt, distaste and profound mistrust that this kind of humour can elicit from people who have experienced, or are at higher risk of experiencing, sexual violence. You may be free to joke about whatever you like, but you will be judged for your humour and you will help create environments which make some people feel safe and others feel alienated. It's worth considering what kind of people you want to reassure and what kind of people you want to push to the edges.

I'd include in this, don't use the verb rape to mean kick ass, thrash, wipe the floor with etc., in a competitive context, e.g "Chelsea are going to rape Man U this weekend."  Stephen recently reported reading the phrase "raped by the postage" to refer to someone being charged high postage. I mean, just no!



* This really shocked me, because Mum is in her late fifties, is made of very stern stuff and would probably respond to the same story coming from another woman with a cunning plot to bring about the creep's humiliating comeuppance. But when it was her own case, she reverted to a young girl second-guessing herself about leaving a party to avoid a boy who just groped her - except that among her machinations, she argued that because of her age, the man couldn't really mean anything sexual or pose any kind of threat.

** Not all women have any interest in male attention, but many women are socialised not to rock that particular boat, regardless of sexuality.