On Feeling, Acting or Being A Creep

Having tweeted a link to this excellent post from Dr Nerdlove: Socially Awkward isn't an Excuse, I entered into a silly circular argument with a friend. My friend expressed confusion and frustration; despite her best efforts, she was always perceived as creepy whenever she had told anyone that she found them attractive. Nobody had explicitly told her she was creepy, so quite foolishly, I entered into an argument about whether this inference was a reasonable one. I should know by now that forcing someone  to argue for their own deficiency doesn't lift anyone's mood.

But the subsequent discussion made me think about the difference between feeling, acting or being a creep.

Feeling like a Creep

There should be a term which is the opposite - the unhealthy polar opposite - to sexual entitlement. Feeling like a creep is close; regarding oneself as physically and mentally disgusting, considering one's existence as a sexual being, an imposition on the rest of the world.

Radiohead's Creep was my theme song from its release in 1993, when I was twelve years old, throughout the following decade or so. I felt that I was a creep, I was a weirdo. WTF was I doing there? I didn't belong there.

There are lots of us who approach sexual maturity in the belief that there's something wrong with our sexuality. Not necessarily wrong as in sinful - although that's often in the mix - but wrong as in damaged or damaging. Words frequently associated with homosexual desire in the media and my household included pervert and predatory. It was more or less against the law for a teacher to discuss the subject of my particular sexuality throughout my high school career.

At school I knew, for sure, how any female object of my desire or affection would feel if she knew, because we did have one out lesbian in our year group; a very tall, dramatic young women whose name wasn't Petronella Conquest but it was pretty close. The worry was, what if she fancied you? After all, girl's a lesbian, she could fancy any of us. And then what? How disgusting would that be? Not that I ever heard any rumour of this girl even flirting with anyone. The fact of her attraction - the fact of her potential attraction - was enough for cries of disgust and outrage to fill the form room. And Petronella was slimmer, more confident, more sophisticated than I and didn't have spots.

So even though I kept everything firmly under wraps, I felt like a creep, like many closeted queer kids in high school; I felt that my desire was predatory, deceptive, a betrayal of my friendships.

And before I got the chance to leave school, set out into the world and find my people, I got sick and grew to like my body an awful lot less. Believing my body to be disgusting made this ten times worse, as if I had no right to sexual pleasure, even in fantasy. In this context, I got together with my first husband, who made me feel better by tolerating me as I was (agreeing that my body was, in fact, quite gruesome), then treating me with the disgust and contempt that I thought I deserved. Until I didn't.

I don't know if straight women are often made to feel creepy - I've not really heard anyone describe that. Unwanted, unloveable or ridiculous, undoubtedly, but I don't know if straight women ever think that their attraction could, if revealed, make someone's skin crawl.  This is how I felt, and how I continued to feel - on and off - for most of my twenties, whether it was about the women or the men I was attracted to; they were all much more beautiful in body, mind and soul than I was. I was the haggard lumpen troll in the shadows, looking on with lecherous eyes.

Nobody should feel that way. It is never true, whoever you are, whatever you look like, whoever you fancy. Even if you fancy someone genuinely inappropriate - it's what you do (or please, don't do) about it that counts.


Acting or Coming Across Like a Creep.

People can come across like a creep inadvertently for three reasons; the things they say and do, the past experiences of the person they're approaching and prejudice.

Everyone - not just the socially awkard - can fluff up in small and big ways that sometimes leads to upset and awkwardness, especially when it comes to flirtation, or conversations that might be read that way. Add alcohol into the mix and things can go very wrong.

My own gaffs have never been terribly dramatic, just being needy and over-keen at times when I've been desperately lonely. But I do remember one due to abject exhaustion: When saying goodnight to a new friend at the end of an evening, I kissed her on each cheek, as the French do. No idea what possessed me -I hadn't done this since the two weeks I spent in France as a child. Then I hugged her, just for good measure. It wasn't an excuse for physical contact - it was as if the contents of my brain had been largely emptied out such that I no longer knew how people of my own culture say goodbye to one another.

However, the effects of social mistakes are usually very short-lived. They can occasionally damage relationships, but this is because of awkwardness, embarrassment, confusion and annoyance - not because someone feels threatened or intimidated in any prolonged way. If you realise you've made a mistake, you apologise (if that doesn't compound things) and try to put it right. There's no argument about what happened. Nobody's left looking over their shoulder all the way home that night.

Things get a little bit worse when others have past experiences of harassment and sexual aggression. Sometimes, an act can seem creepy because it bears some similarity to other acts of sexual aggression. For example, if a woman routinely experiences sexual harassment at the bus stop, then she may prefer that nobody ever speaks to her at the bus stop, because however friendly it may seem at first, she's seen it blow up in her face before. All men run the risk of seeming creepy talking to women they don't know well. I'd still say it's worth trying to talk to one another (well I think so, but I have never lived in a city).

However, sometimes we seem creepy just because of who we are.  Sometimes, this is about the big prejudices: homophobia, disablism, classism and racism can all make people perceive others as creepy. In movies, I have seen German, Eastern European and Russian accents, stereotypically Arab features, effeminacy in men and butchness in women, plus impairment - especially albinism, facial scars, withered hands, limps and so forth - all used to signpost that a character is sinister. Also, men who are very thin, very fat or very short are often seen this way, as if non-standard bodies render any sexual feelings they have something depraved or predatory (in fat, old and short women, sexual desire is rendered comical rather than threatening).

The little course in cognitive poetics we're doing has talked about the personification of Uriah Heap - the literary archetype of creep - but when you reread the text, the greatest part of his initial creepiness is the fact he is very pale, thin, ugly and fidgetty. He is a kiss-ass who behaves very badly, but that comes much later; at first, we hate him mostly for what he looks like.

Some adult straight men are nervous of gay men, for the same reason my classmates were nervous of Petronella. Disabled people are perhaps especially vulnerable to this because we are often seen as sexless - to assert our sexuality, even in the most gently flirtatious remark, might make us appear to be something other than what we seemed - like the cherub-faced child in the horror movie that suddenly says something knowing about tracker mortgages.

Then there are the lesser prejudices. I grew up with the idea that men in long grey raincoats are creepy, even though I've never encountered a creepy man in a long grey raincoat. Some people find goths creepy, as well as punks and geeks, horror buffs, taxidermists, antique dealers, folk who love reptiles and spiders, butchers, abattoir workers, criminologists, Daleks, undertakers, Bronies or adult Beliebers (okay, so maybe they are).

The trouble is, with all of the above, we can't ever be sure why someone else might think us creepy. We can rarely be sure that they even do. We just have to watch our behaviour, because that's the one thing we're responsible for and the one thing we can change if we mess up.

However, because we're all decent people, we accept rejection. Romantic or social rejection, whether grounded in high ideals, the lowest form of bigotry or pure whim, is not something that can be argued with. Real creeps don't get that. We do.


On Being A Creep.

Being a creep is about entitlement. It's not always entitlement to sex; it is sometimes about romantic attention or social power, but there's often a sexual element. Entitlement doesn't necessarily coincide with social confidence, but creepiness (meant here to mean that underhand, passive aggressive strain of sexual aggression) often coincides with a sort of arrogance of the underdog. Doctor Nerdlove focuses on this as an issue within geek culture, but Eleanor Brown tweeted this newspaper cutting, which demonstrates the same kind of thing elsewhere:

It reads: Rush-Hour Crush. Love (well, lust) is all around us, as is proven by the messages left by our commuter cupids.

Cappuchino One Sugar. If you're the girl I think you are, I'm often in the queue behind you at Letchworth Garden City station's coffee shop. I've tried flirting but you're too busy trying to get the attention of the guy behind the counter. I'm training to be a barrister, you're ignoring me for a barista. Please turn around so we can discuss my briefs.

Shiny Shoes, English Breakfast Tea.

This chap is a creep. He is addressing a young woman who, despite his efforts, demonstrates zero interest in him. In Shiny Shoes' universe, this is not right or fair. The girl is wrong. What she needs is:

• To be told that she is making a ridiculous mistake.
• To be shown he is deserving of her attention, because of the job he does/ is training for.
• To be encouraged with a very sexual joke. The law is a rich ground for puns. He could have said, "Turn around and judge for yourself." or "Let's discuss this case." or even "You've got a lovely a posteriori." which at least keeps things to a level of outer clothing and appearance. 

Notice the lack of compliments. The guy doesn't even offer to buy her a coffee. 

Now this ad is unlikely to have deeply upset the young woman. In my mind, the woman and the barista both read it, their shared mortification brings them together and this cutting will eventually be pasted in the back of their wedding album, so they can tell the story to their kids.

However, some people act this way in the same room, when you are alone with them or in private conversation on-line, and sometimes while making physical contact with you. The message is always the same; 

My sexual, romantic or social desires are right. I am deserving of love, sexual gratification, friendship and status. People should pay attention to me. People should want to be with me, on my terms. People should laugh at my jokes and be flattered by my attentions.  

Your feelings are misguided or you're fooling yourself about how you really feel. The boundaries you've established - by drawing a line, rejecting me, or ignoring me in the coffee shop queue - are flexible. Your verbal and non-verbal communication is open to any interpretation I like. If you react badly, it is because there's something wrong with you, you stupid bitch.

Some people have argued that the use of the word creep might be regarded as the male equivalent of slut, and that calling a man a creep is shaming him for his sexuality. This is not the case at all. The big difference is that the word slut, even in its more pejorative sense, does not describe someone who is imposing her sexuality on others. She might be a corrupting influence (according to the spirit of this slur), but she doesn't coerce.

Meanwhile, women can be creepy. Women can force lingering physical contact on people who didn't ask for it - I've seen women plant themselves on men's laps without introduction, I've had women touch me far more than I'd like. Women can react very badly to rejection, become angry or simply ignore what is being said to them. Women can believe that they are magically worthy and deserving of sexual attention, love or social power. And I don't think women are any less capable than men of arguing that the people who reject them are at fault; they're shallow, prejudiced, lying about their sexuality, or are capable of handling a real woman.

Yet out in a world where men tend to have greater social capital, are more physically threatening and are often sold narratives where all good men, including the underdogs, are rewarded with female attention, the worst of this behaviour is most often committed by men.

Thanks to Lisa, Mary & The Morningstar for the discussion about this.

On Poverty & Reading Books

Book shelves with books on.

I'm wanting to get back to more personal blogging, but here's a thing about books and poverty.

England divided into 'readers and watchers', BBC News:

England is suffering from a "worrying cultural divide" with poor adults much less likely to read books than their richer neighbours, a report says. The country is divided into two nations, those who read weekly or daily, and those who prefer TV and DVDs, it says. It finds key links between an individual's social background and how likely they are to read.

There are a lot of statistics in the article, few of which are very shocking. For example, rich people own more books than poor people. Who'd have thought it? Another strange phenomenon I have observed is that although richer people have only slightly more feet on average, they own considerably more shoes...

More than one in four (27%) of adults from the poorest socio-economic backgrounds said they never read books themselves, compared with just 13% of those from the richest socio-economic backgrounds.

Around 16% of the population of England is "functionally illiterate". The chances are that almost all of these people occupy the poorest socio-economic background, for obvious reasons of both cause and effect. That entirely accounts for the difference - in fact, if the sample were big enough, it might even suggest that a slightly greater proportion of rich people who can read choose not to.

And more than six in 10 (62%) of those from the richest backgrounds said they read daily or weekly, compared with four in 10 (42%) of those from the poorest.

Okay, so on these figures, the ones that indicate the worrying cultural divide, we're talking 60:40. To be perfectly honest, I'm pleasantly surprised that the difference is so small, given the massive disparities in educational opportunities, the fact that poorer people generally have less time, less access to books, live in environments less conducive to reading in peace and are more likely to have intellectual, cognitive or sensory impairments that prevent them from reading.

That's if we assume that everyone is being honest. We know that when you ask men and women how many sexual partners they've had, you end up with a statistical difference which simply cannot be true; men feel under pressure to raise the figure, women feel under pressure to lower it. I suspect something similar here.

Among the wealthier middle classes, there is a much stronger hierarchy of the arts; middle class people frequently boast that they never watch the television that takes pride of place in their living room. Meanwhile, although to a lesser extent, working class people (especially men) sometimes feel that the world of books doesn't belong to them. They may even feel that the books they read don't count as proper books.

I suspect that some poorer respondents may have downplayed their reading and I'm absolutely certain that some richer respondents will have exaggerated theirs.

And 83% of adults from the richest group feel that reading improves their lives, compared with 72% of those from the poorest group.

Hmm, yes, well. The difference here is very slight, but here's the thing:

As well as middle class snobbery and mythos surrounding the arts (Art can save the world!), richer people have much easier lives. Thus, when they think about things that can improve their lives, they are likely to think about books, art and esoteric things rather than, you know, decent affordable housing, a living wage, having enough food to eat and everything else they take for granted but others cannot.

I believe wholeheartedly that books do improve our lives, and perhaps make the most difference to the most difficult lives, but I understand there may be a difference in the way this question is understood by richer and poorer readers.

The article concludes:

Viv Bird, chief executive of Booktrust, said: "This research indicates that frequent readers are more likely to be satisfied with life, happier and more successful in their professional lives. 

"But there is a worrying cultural divide linked to deprivation. There will never be a one-size-fits-all solution when it comes to social mobility, but reading plays an important role - more action is needed to support families."

 Yet there are no suggestions about what this support entails. So here are mine:

1. Keep libraries open and promote what they do to the wider community, including the increasing stock of ebooks and audiobooks you can borrow on-line.
2. Promote ebook, braille and audiobook formats, to broaden the spectrum of people who can access literature. Audiobooks also raise the possibility of reading as a group activity, which makes it more appealing for people low on time and energy to spend with their loved ones. (Historically, people read out loud much more, but audiobooks are the low-energy option).
3. Relieve poverty with a living wage and decent affordable housing. However one feels about the inevitability of material inequality, we should aim towards a world where everyone at least has a chance to have a little culture in their lives. People can read in all kinds of places and situations, but having space, peace, time and the absence of immense pressure, is sure going to help.

Also, you know, sort out education so that people grow up enjoying reading, rather than seeing a book as a job of work or a task to be completed for some reward other than its own sake. 

Sexuality & Evolutionary Non-Mysteries

The BBC has a lengthy magazine article entitled The Evolutionary Puzzle of Homosexuality. Of course, it is useful for science to investigate sexuality, genetics, conditioning and so forth in order to better understand ourselves and the way we all tick. But something is amiss:

"This is a paradox from an evolutionary perspective," says Paul Vasey from the University of Lethbridge in Canada. "How can a trait like male homosexuality, which has a genetic component, persist over evolutionary time if the individuals that carry the genes associated with that trait are not reproducing?"

In other words, there is an argument that goes:

• Men whose sexual behaviour is largely or exclusively homosexual are less likely to have children.
• If traits are genetic, they are passed down by people having children. 
• Therefore, homosexuality cannot have a genetic element.

And yet there is strong evidence that sexual orientation is largely innate, homosexuality is evident even in societies where there is deadly pressure to conform and homosexual behaviour is seen throughout nature. What can it all mean?!

It benefits scientists and universities, who really ought to know better, to keep talking about, giving interviews and publishing papers on this alleged paradox, because it is a controversial and salacious subject. Oooh, sex!  Oooh, controversy! Oooh, mystery!

And thus you get nonsense like the Gay Uncle Hypothesis - the idea that the presence of childless adult men* in the extended family was of evolutionary advantage to that family's genes. In other words, gay men exist to babysit and mentor the children of their straight brothers (though not their sisters, particularly). Some (usually straight) people like this theory, because it justifies the existence of gay folk and renders their difference a practical advantage to the normals. It's perhaps one step up from the argument gay men exist because musical theatre was crucial to keeping warm and cheerful throughout the the last Ice Age (some may scoff - my gut says it was).

But there is no paradox. Let's frame our syllogism with a slightly different example:

• People with Down Syndrome are less likely to have children. They are less likely to survive far into adulthood and, on average, they have some disadvantage when it comes to sexual selection and child-raising. 
• If traits are genetic, they are passed down by people having children.
• Therefore, Down Syndrome cannot have a genetic element.

Down Syndrome, as we know, is straightforwardly genetic, caused by an extra copy of chromosome 21. Yet it is rarely asked why people with Down Syndrome should still be being born after millions of years of human evolution. Why? The subject is not sexy and, although there's no shortage of discrimination against people with Down Syndrome, nobody suggests it involves choice on the part of the individual (their mother, maybe, but not them).

Of course, as with many genetic disorders and human traits that we don't happen to call "disorders", this mutation usually occurs spontaneously or else trickles down in families where the vast majority of people don't have this trait. It happens because it happens, because DNA must mutate in order for organisms to adapt and evolve.

Mutation is a good thing in terms of species survival, but it is entirely random. The fact that one mutation can create a dynastic dead-end for one individual in one set of circumstances doesn't stop this kind of mutation from occurring. Virus strains can - and often do - mutate to become less contagious.

People with Down Syndrome are much less vulnerable to some sorts of cancers. Maybe that means the condition plays or has played some sort of as yet unseen beneficial role within families?

Neither homosexuality or bisexuality appear to be entirely genetic; these traits are undoubtedly a special combination of genes (probably multiple genes), in utero hormonal events and other environmental influences. But maybe something about sexualities which make having children less likely (and in this we must include heterosexual trans people, asexual people, bisexuals in same gender partnerships and anyone disinclined towards PIV sex) has some overarching benefit on a family's chances of survival? Or maybe not.

And so what if it doesn't? Does this justify homophobia? Would or should it even matter if these were conscious choices that individuals made about the life they wanted to live?

There are far more questions than answers about evolution and the vast range of sexual behaviour in humans and other animals. The framing of one harmless, relatively common and naturally-occurring deviation as a mystery is unhelpful, both in terms of the public understanding of science and our ongoing struggle towards social justice.


* Lesbians and bisexual women are still largely side-lined in research into sexual orientation. We know all kinds of strange trivia about gay men's fingers and how their hair typically whorls clockwise (or is it anti-clockwise? I think it matters enough to forget). but nearly nothing about lesbian eyebrows, for example. I may apply for a grant. 

What it means to be Cisgender.

Obviously, everything to do with human identity is socially constructed. When we use labels to identify ourselves, we're sometimes talking about things we feel very deeply, sometimes about things we see purely politically and sometimes, it's really more about the way other people see us.

So for example, my sexuality is integral to who I am, far more than my gender: I cannot conceive a version of myself with a different sexuality, whereas in almost all dreams where I am not myself, I am a man. Being disabled is very important to many experiences I have had and I strongly identify with other disabled people fighting discrimination, but I am perceived as and therefore feel more or less disabled in different contexts - it is even conceivable, though very unlikely, that one day I won't be disabled any more. Being white is something I am aware of in many different contexts - probably mostly in terms of consuming fiction, where this one aspect of my identity is treated as not only normal but best (stories have to be about white people!).

Being a cis woman is not an integral part of my identity - I rarely think about being cis at all - but it is a privilege I have and am aware of. Meanwhile, Glosswitch has been wrestling with what it means to be cis:

"To break the stranglehold gender stereotypes have over human experience – distorting and restricting our experience of ourselves – should not involve telling whole swathes of humankind that they “match” their gender. [...] Matching cis maleness – the identity most closely associated with “being human” – must feel like winning the gender lottery. It’s not the same if you inhabit a female body. Who’d want the values associated with that? Yet that is what cis women are told they are stuck with."

This isn't how I see it at all.

Being cis gender means I am not transgender. It certainly doesn't mean that I, as a woman, am everything that a woman is supposed to be within my culture - or even any of those things. It doesn't say very much about the clothes I wear, the way I think, my hobbies and interests or my sexuality. This doesn't even attempt to say anything about my genes, genitals or reproductive potential (Most cis women, most of the time, cannot get pregnant. A significant minority of cis women can never get pregnant.)

All my being cis means is that (a) the word woman is the best way I have of describing my gender and (b) this coincides with the way that other people always have described me. Thus cis, on the side of, as opposed to trans, across. This doesn't mean that a trans person and I can't have a very great deal in common - including shared experiences of gender non-conformity and sexuality, psychological dysmorphia issues as well as some crossover between trans and disabled experiences, especially while transgender remains heavily pathologised. But I am not trans and perhaps crucially, I have never received the negative treatment a trans person receives.

It is quite ludicrous to imagine that human beings might be divided between those people who feel comfortable in their assigned gender - along with all the accompanying cultural baggage - and those who belong to another gender altogether (presumably, embracing the accompanying cultural baggage of their true gender). There's perhaps genderqueer in between, and here, the definitions are looser - many cis folk might well identify as genderqueer given greater personal freedom and knowledge of this possibility. However, this still doesn't mean that everyone - or anyone - left in the cis category would match their assigned gender. Gender is a social construct. Human beings use social constructs and are very heavily influenced by social constructs, but we also strain against them, constantly, because they don't bloody fit.

There are obvious parallels with straight folk feeling uncomfortable with the idea of being straight. There are reasons why they might, besides the old "The word for what I am is normal." nonsense (the usual objection to cis, along with "I've never heard that word before so I'm determined to be insulted by it"). A woman may be exclusively attracted to men, but completely reject the norms of heterosexual relationships that her culture presents to her. She may watch romantic movies and not recognise the role assigned to her within relationships; she may reject monogamy or marriage, she may not be attracted to small, quiet, bookish men in a culture that tells her to fancy macho hunks.

But straight is still the most likely way of describing her sexuality. You can still be straight and not fit into a world where the dynamics, depth and even timing of heterosexual relationships is strictly prescribed.  You can still be straight and experience discrimination based on your deviance from hetronormative roles, just as almost all cis women, at one time or another, have been made to feel that we are not living up to expectations of womanhood.

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.

A rag rug to a bull

A rag rug: A squarish rough-textured rug with a four-petaled
flower pattern in blues, greens, purples and pinks.

Craft is one of the most universal and least manageable symptoms of chronic illness. Stephen and I have been quite unwell throughout much of January and thus have had enough time when we weren't able to do anything more useful, in which to produce a rag rug.

There were many scraps of nice fabric left over from my wedding dress and other sewing projects, plus I had a small collection of old clothes which were too worn out for selling or donating - jersey tops which were stretched, had holes in or splodges of paint on them. Naturally, we had to accept that any rug we made was coloured in the the same palette as my wardrobe. 

The back of the rug: hessian with
loops of fabric sticking through.

To make a rag rug, you need some hessian sacking (£2.50 a metre, including postage) and a load of waste fabric, cut into small strips. You force the strips through the weave of the hessian, then back up again, and secure with a knot. Granny says the knots are unnecessary, but I imagine she may have done a neater job in wartime than we could manage.  

Close up of the rug texture.

I bought a cheap wooden tool called a proddy from eBay but we gave it up pretty quickly for an ordinary pencil. A pencil does just fine and if you're sat in bed and lose it until the covers, you can always find another pencil. Our bed is generally full of pens and pencils.

Rag-rugging uses a lot of fabric; there are six jersey tops in this, as well as significant remnants of similar fabric. Jersey, or t-shirt fabric, is particularly good for rag-rugging because (a) most of us wear a lot of it and these garments do wear out and (b) there's stretch in the fabric, so while it can be a bugger to sew with, it's easy to pull about and tie knots in. There are all kinds of fabrics in this rug, including stretch velvet, flannel from some old pyjamas and silk from some of the ties, but most of it is cotton jersey. 

There's absolutely no skill to rag-rugging at all and the only point you need to concentrate is to avoid cutting off your fingers when using scissors. It is, however, a very compelling activity, so anyone has to be careful with doing too much of it in one stretch, especially while listening to a really good audiobook (mostly Under The Dome by Stephen King).

It's not really going to live in front of my folks'
woodburner, but it does look nice there...

The Cult of Self-Improvement

It's that time of year; adverts for new diet regimes, articles about makeovers (houses, wardrobes, faces, lives) and on-line dating (I did enjoy the BBC's two offerings on what not to put in a profile). This year, the Guardian is offering an entire weekend supplement every month to help enable its readers to live more intensely. I panicked - this directly clashes with my personal ambition, which is to live a little less intensely; to lay back and consider the lilies rather than wake up and smell the coffee.

But I can keep breathing, because the Guardian's campaign to intensify your life includes instructions for knitting a scarf. The Do Something Manifesto explains the urgency in their woolly-minded project:

"As a society, we've long championed sober diligence over the quest for thrills. But the tide of research is turning. Recent years have established that a liking for novelty, neophilia, is a reliable predictor of wellbeing, provided you've got a certain capacity for perseverance, too. Couples bond more, it's been shown, when they pursue unfamiliar activities together, rather than the comforts of movies and meals out ("Marriage," as Balzac wrote, "must fight constantly against a monster that devours everything: routine.")"

Knitwear has a place in marriage: We model
our Smitten & Mittens, a wedding present
 knitted by idlevic.
(A white man and woman huddle together,
there hands held in a red heart-shaped
double woolen mitten in front of them.)

Of course, we only got married last year and I reckon we need to tire of that thing with the hedgehog costume before we bring knitting needles into the bedroom (there's a movie about that). The Guardian also suggest starting a Supper Club which strikes me as a great idea - I know so few people who call their evening meal supper, they should definitely get together and re-enact scenes from P G Woodhouse.

However, in line with all our culture's self-improvement narratives, the Do Something supplement is about doing more work and spending money in order to improve one's social status; to gain more whimsical anecdotes ("I was once a gorilla keeper for a day"), add upholstery skills to your CV, to make more of the right kind of friends, invite them round for tea and charge them £15 for the privilege.

This is the capitalist model of self-improvement. You buy an experience; an upgrade on yourself and your life. Even if there's no monetary transaction involved (although there almost always is), it's still about labour and acquisition; regardless of whether you enjoy knitting or want a scarf, we're told that knitting a scarf

"even makes watching telly feel productive". 

The pressure to reinvent ourselves is a very profitable one. As well as the spend required to coax them into being, the new you will require new trappings of identity - a new look, new surroundings, new accessories. After a short while, you are likely to see similarities between the new you and the old you, tempting you to seek out yet another newer shinier you. Self-help is like pornography; if it truly fulfilled rather than exciting then frustrating, the consumer would not keep coming back for new variations on the theme.

I've always been attracted to people who see themselves as works in progress. As I've grown older, I have become wise to those who have found the answer, usually unexpected (vigorous wishful thinking, doga), which is going to change everything.

Diane doesn't know it, but she is one of the wisest people I know when it comes to personal change:

"It’s taken me over a decade (I am not good at life) to realise that feeling turned upside down and like you’re about to hyperventilate is just… how it feels. Even when you’re moving towards something positive, change does not feel good. It’s so much easier to resist, to give in to the magnetic pull of I can’t do this. But it turns out that resistance and all those crappy feelings are part of the process. When you don’t recognise your life and nothing feels safe, it probably means you’re moving forward. 

"The other messed up, un-movie-montage-like thing I’ve learned is that change can be slow. Sometimes it’s so slow that it doesn’t seem like change at all."

I don't believe Diane is not good at life. Many people get through their whole lives without making any dynamic changes at all - many are lucky enough not to need to, others don't bother to try. Outright panic may not be inevitable, but meaningful change is always hard and often slow. It almost always involves either removing oneself from a warm, familiar and often comfortable source of misery (a place, relationship, job, personal habit) or else embarking on a terrifying adventure that should lead to somewhere good. If significant change was ever easy, we'd never find ourselves in positions when it needed to be thought about in any depth..

Meanwhile, when I first saw the phrase Do Something on the Guardian website, I had a naive expectation. I thought, since the Guardian is into hand-wringing about the injustices of the world (and they sometimes publish genuinely good social justice writing), a Do Something Manifesto might be about, you know, doing something to making the world a better place; helping out in one's community, supporting one's friends and family, giving time and energy to causes that make a difference. Especially as the tide of research would suggest that this, far more than neophilia (with all due respect to Keanu), is what makes people feel good.