There’s something alchemic about dyeing my hair. Sitting in the bathroom in a ratty old shirt and ill-fitting plastic gloves mixing chemicals, massaging in the pungent mix and then covering it. Waiting. And then, like magic, you sluice the dye from your head with sharply cold water. The colour streams off: red, blue, purple, gold. The first moment you flip your head and peer into the mirror is terrifying and wonderful. What will you see? Who will stare back?

Each time I’ve dyed my hair has been a transformation. At the beginning of my second year of university, filled with equal parts hope and terror about what was to come, I sat in our grotty student kitchen and my friend worked the gold-blonde dye into my head. I washed it clean and dried it into a fluffy Monroe-esque halo.

“It’s so pale!” I kept saying. “It’s so bright! I love it!” We went to the pub that night and I wore bright lipstick (borrowed) and a beaming smile (mine).

As the friendships faded and soured and my mind darkened, I stopped dyeing it. Taking care of myself slipped further and further down a to do list that already seemed too long. I did my roots before my interview for the job that got me out of university, and again before I went down to Stevenage to start it. Somehow, though, in a job that valued me for my sharp mind and quick hands, among people who loved me for my kind heart and open arms, I didn’t feel that dyeing my hair was a priority. I got a very expensive (and deeply disappointing) haircut, expanded my nail polish collection from ‘impressive’ to ‘extensive’, made eight sock monkeys in two months and watched the entirety of the London Olympics from my sickbed as my roots grew out.

September found me back in Leicester, waiting to get ill. My therapist and I talked about the dread that followed me around, and I sat in lectures with that fear as my study companion. On a cold October day, I texted my boyfriend: ‘opinions on redheads?’ and bought the dye. Red dye starts out a rich violet. I smothered my head in the mix, trying to avoid flicking it all over my bathroom, and waited for it to develop. The water, when I rinsed my hair, was the colour of blood. The next day, I walked to my therapy appointment with in flaming crown of red. “Ginger!” yelled someone driving past. I smiled beatifically as I flipped them off. Damn right.

In that long, freezing, dark winter my red hair was like a beacon. It reminded me that I had autonomy: that I had choice. My therapist remarked how light I seemed as I walked into the room, the day after I dyed it. My boyfriend walked right past me the first time I went to meet him at the station. I was transformed. I met friends in Bristol in March, and they told me how great it looked.

“How are you?” they asked.

“I feel like I’m half way to a breakdown!” I joked, my mind as sharp and brittle as the frost-hard grass. The next day, I walked across the park in a soft flurry of snow and moonshine. The hospital’s empty corridors echoed. I couldn’t speak to the nurse at the reception desk: she gave me a piece of paper and I wrote ‘I think I need to see a psychiatrist, I don’t feel safe’ on it.

My hair faded as I left university until it was a soft golden amber. I was safe again. I trusted my mind to take care of me as I slowly put myself back together. I walked a familiar knife-edge pathway until it widened out to a comfortable road with soft slopes on either side instead of sharp cliffs. I moved to Cambridge and dyed my hair blonde again so I could look for jobs.

Last night I re-dyed my hair. Six weeks ago my mother and I laughed in the kitchen as she bleached it, and a few days later I accidentally turned it the colour of cotton candy. It took a few attempts for it to reach the soft lavender shade I covet so. Last night’s mix was a little dark, and the underside of my hair didn’t get enough. I am crowned in purple, grey, gold, blue. I will mix more dye tomorrow: a dab of fuchsia, a swirl of cobalt blue and a hefty dose of pale cream conditioner to dilute it. I am back in university, where I can experiment again. I can dye my hair ludicrous colours while I decide what I want to do with my life and who I want to be.

I am not Marilyn Monroe, with her wide eyes and bright lips and blonde halo. I am not flame-red, burning fast and hoping to get out before I am ashes. My hair is coloured differently each day, in each light. The pigments fade in the light and slip from my hair in water. I smother my head in colour every few washes and wait with bated breath to see how it will look this time. I am transformed, daily.

How you doin’?

It’s not a question I ever thought I’d dread. We start most interactions – meaningful and casual alike – by checking in with one another: ‘How’re you?’ ‘Good thanks, and yourself?’. But for those of us with more complex answers, that simple question becomes a minefield.

How am I? How much does this person know about me, and my illness? How much do I want them to know? What have others told them, if I myself haven’t disclosed much? When it comes to acquaintances, I smile and shrug and tell them I can’t complain. My close friends get the honest answer, unless I’m too sick to do anything but fake it till I make it. It’s the in-between that causes me problems.

I volunteer at the local Riding for Disabled group, and as my dad runs it and I’ve been helping there for seven years, a lot of people know a lot about me one way or the other. Some of them are friends of the family, and so will be asking me how I am knowing I’ve recently been very ill. Others may have heard I’ve not been well, but not know how, or if that’s even true. Others  have no idea. Responding to an inquiry after my health is therefore more than a little complicated!

I’ve ended up accidentally telling someone about my recent illness already, and I’m not sure how much I want people to know. Disclosure is always complex. Most people will respond well enough, and I’m lucky in that I relatively rarely get treated to a ‘medication is all a con and you should heal yourself with the power of x’ lecture. But one lecture can send me spiralling off into doubt and depression. Am I making this up? Is it really that bad? Wouldn’t I be better off without drugs?

There’s also the fact that once you’ve told someone you’ve spent the last few months deeply depressed and incapacited, you’ve both got to participate in the ‘poor you’ dance. I hate this dance! It’s the one where I say what’s been going on, you express your sadness, perhaps with bonus arm on my arm in comfort*, and then I try and brush it off and claim it’s fine and not that bad because I hate being comforted.  I fully accept that this is my problem to deal with. My weirdness around being comforted is really not something I can, or should, ask the world to accommodate, but it still means I hate the ‘poor you’ dance.

I suppose this is where I should sum things up, but I don’t think there’s a neat summary to be found here. Should we all accept that awkwardness around the question of ‘how are you’ is just a thing that happens? Should we start using a different standard opening question? Should I move to the middle of a wilderness? And, most importantly, do I need to choreograph actual moves to the Poor You Dance, and perhaps start an internet sensation? These are the important questions of our time, guys.



*This is, maybe, the one thing I could reasonably ask people to change. Please try to avoid touching people without asking their consent. A significant minority of people find it really uncomfortable, myself included! (In fact, if I’m panicking, touching me literally results in me not breathing. Touch: not always comforting!)

Don’t call me crazy

I’ve talked before about how important I think words can be. The pen is mightier than the sword, and all that. It’s more than just words, though. The way we speak about people who are the ‘other’ – whether because they don’t have the same skin colour as us, fancy different people or have different brain chemistry – is incredibly powerful. It’s more powerful because the very people we’re othering are often the people with the least power to object to it.

This is hardly revolutionary as an idea – many people, almost all of them cleverer than me, have written about this before – but it seems extraordinary to me just how often we, as a society, seem to need a quick reminder. Yes, it’s a nuisance to have to think of a different word to describe someone than ‘schizo/crazy/psycho/bonkers’ but, hey, it doesn’t really compare to the amount of hurt you can cause by using those words casually. As a person with a mental health problem, let me assure you that is does hurt when I hear you dismiss a person by calling them crazy.

Here’s why. When you’ve got a mental health problem, that means your brain actively tries to make your life more difficult. It lies to you: tells you that the people you think are your friends actually aren’t, that you’re not safe, that you’re about to be hurt or abandoned or ridiculed and, more than that, that you deserve this. I’m lucky; I don’t then have to deal with the fact that I can no longer trust the evidence of my basic senses. I don’t have to balance the probability that the things I just saw or heard may not even be ‘real’, that they may be hallucinations. When you’re mentally ill, your brain is telling you, all the time, that you are less than and that everyone else knows it.

Now take a wider look. How often, in an average week, do you see, hear or read something or someone dismissing those with mental health problems? Perhaps it’s a newspaper talking about a recently convicted violent offender with schizophrenia, or speculating on the mental health of someone who’s hurt others. Perhaps it’s a story about ‘benefits scroungers’ who are making up their crippling depression. Perhaps it’s someone suggesting that a woman who ‘cried rape’ has mental health problems and so can’t be trusted to say what’s happened to her own body. Or maybe, like I said before, it’s just someone passing off another person by saying: ‘Oh, her? She’s crazy, don’t listen to what she says’.

It’s not just our minds that are telling us we can’t be trusted. It’s the whole world. It’s so easy to assume that, because parts of a person’s thinking are off, that they can’t be telling the truth about anything, even if you’re kind enough to assume that it’s unintentional. It’s easy to assume that because I have depression, me saying I’m upset by something is just an ‘overreaction’, rather than a perfectly justified response. It’s easy to assume that people who hurt other people must be mad, and that mad people are therefore more likely to hurt you. And yet, that’s not the case. Using everyday words, everyday slurs, as if they are unimportant is easy, but it builds up a world that isn’t a reflection of the truth.

So I’m asking you to do something hard: stop using those words. Next time you say something that makes a little bit of your brain go ‘ooh, should I have said that?’ take note, and don’t do it again. Start noticing when you see people being dismissed because of factors beyond their control: whether that’s their race, sexuality, gender, or mental health. Start speaking up: start challenging those lazy little words that build a world of lies. No, it’s not easy. But it’s worth doing, isn’t it? And above all, for God’s sake, don’t call me crazy.

Giving advice to depressed people

I think everybody who has been ill for a long time has heard it: well-meaning advice. For a depressed person, it’s commonly ‘I’ve heard eating healthily can help’ or ‘exercise releases endorphins, doesn’t it?’ Perhaps the most frustrating for me, personally, is ‘if you just try and do something, no matter how little, it’ll help’. For those people who haven’t experienced it, the catch-22 of severe depression can be frustrating. For those who have it, it is maddening. All of those pieces of advice are helpful: healthy eating, exercise and trying to manage small tasks for the sake of the associated morale boost will all help, but they may all be equally impossible. The idea of doing anything when severely depressed can be overwhelming. The idea of just getting out of bed and sitting at my computer, rather than in my bed, is too much. My depressed mind cannot see small tasks in isolation: it immediately recognises ‘getting out of bed’ as falling into the same category as ‘dressing, washing, eating, leaving the room…’ and starts to panic. Add the typically repetitive, overwhelming thoughts that depression causes and I freeze. I can’t, my mind tells me over and over, I can’t, I can’t, I can’t.

Days when I have managed to get up and go somewhere, perhaps to the doctor’s, don’t necessarily signal my being much better. Appearances can be deceiving; in the depressed, they frequently are. I would only leave the house if I had managed to meet my baseline of ‘presentable’ and that effort, with all its associated tasks (brush your hair, pick out clothes, put them on, find shoes, put those on…), would probably have used up all my reserves. I might actually be more exhausted and miserable on a day when I was at the doctor’s than on a day when I didn’t have the energy to leave bed.

This is why being told by a doctor that exercise would cheer me up sounds a lot like a bad joke. Exercise?! You want me to what?! Even now, when I am so much better that those days staring a wall with the rhythm of ‘it’s too much’ beating in my head like a drum, are like a faded nightmare, exercise remains difficult. There are just too many barriers. I registered for my gym back in November. I haven’t yet been able to attend an induction session: they have to be pre-booked, you see, and my sleeping patterns are so unpredictable that I can’t know in advance if I’ll be awake for the session. I have made, and failed to turn up to, three appointments. When I do finally manage to get to one, that won’t be my only hurdle knocked down. Depending on the day, I may be too socially anxious to face exercising when there are people around (annoyingly, my highly effective anxiety medication lowers my blood pressure so much it would be dangerous for me to exercise). I may simply be too tired – at the moment, I’m sleeping for anywhere between 10 and 26 hours. I may not have eaten, or be unable to summon up the motivation to walk the ten minutes to the gym. The list goes on. Advising a depressed person to exercise is painfully short-sighted.

And yet, and yet, and yet… exercise does release endorphins. Briefly, I was well enough to go to the gym at least once a week. I could not have been more irritated to find that my mood skyrocketed after 20 minutes on a cross-trainer. But just because it worked, it doesn’t mean that those barriers I listed above went away. In fact, they’re back. It just so happens that sometimes I have enough energy to knock them down. Other days I don’t.

This is why offering advice to a depressed or otherwise disabled person is a minefield: when you’re offering advice, it might well be true. That doesn’t mean it’s helpful. And I’m going to assume that you’re coming at this from love, and wanting to be helpful. Small pieces of advice, like: look, here is a banana, please eat this banana because I know you love them and it will help you feel better or I have laid you out a lovely fluffy dressing gown, please put it on and come sit with me may be helpful. Large, generalised ones are often not. Neither, in many cases, is your life experience. Yes, you have probably been in situations like this before (who doesn’t sometimes feel fat and ugly and unfit and gross at the gym) but you, and indeed I, can never speak as to how another person’s experience is. Another tricky thing about depression is that it often takes a universal feeling of sadness or discomfort and dials it up to 10, while placing it in a context of frequently if not always feeling sad and out-of-place. Instead of offering ‘I’ve been there’ comment’s, I find it is often more helpful to offer the sympathy you mean to give – ‘that sucks, feeling that way in a gym is horrible’ rather than saying ‘I feel like that too’.

This is because while depressed people get a lot of advice, I found that I rarely got what I most needed: someone to listen to me, and reassure me that my responses were natural, and understandable. Perhaps the best thing anyone has ever said to me was when my doctor, rather than bluntly asking if I was suicidal, listened to what I had told her and said ‘it sounds like you’re having a really tough time right now. It must be really easy to feel like your life isn’t important, or that it would be easier to die, because depression often makes people feel that way, and you’ve had a horrible time recently’. I cried, not because what she was saying was true, but because she got it. Just listening to someone’s pain, and telling them that you’re sorry for it, and see that it exists, can be so powerful. So, please, don’t offer advice: offer understanding, and comfort, and kindness. I promise you, it is much rarer and all the more powerful for it.

These aren’t resolutions, honest…

Like a lot of people, I’m really not very fond of New Year’s Resolutions. You start off, on January 1st, all cheerful and optimistic. This year, you think to yourself, THIS YEAR, I’m going to…..

And that’s where it all goes wrong. Because inevitably you end that sentence with some beautiful aspiration that you hope will lead to Future You, thinner, prettier, smarter and healthier, looking back and going ‘Wow. How did I live like that before?’. Whereas we all know what happens really. Future You will probably be much the same – same weight, just as good looking, just as smart or dumb and just as healthy, and still thinking they can change all that with a few well-intentioned resolutions.

So this year I’m not going to try and make huge sweeping changes to my life. This is partly because, for the first time in about five or six years, the last year actually hasn’t been horrifying. If all my years are like 2012, that’ll do me just fine, thank you very much. But there are a few small things I’d like to alter. Not resolutions, but small changes I hope make my life better in some small way.

1)      Use a light therapy box. My depression isn’t too bad at the moment, but I take a definite dip in the winter. For me, that manifests as sleeping A LOT, eating rubbish and losing my motivation. I’m hoping a light box will help with that. That means for at least half an hour every day, you’ll be able to find me recreating a tropical paradise in my room.

2)      Try intermittent fasting for a few months. I know, I know, diets are a traditional (and terrible) New Year Resolution. But intermittent fasting, where you eat normally 5 days of the week and fast for 2, has been shown by research to reduce inflammation, be slightly cancer protective, increase your metabolism and generally be pretty darn good for you. While it will also make you lose weight, I’m definitely not doing it for that reason. I actually like my body, with its curves and wobbles. I earned this fat when I started taking the anti-depressant I’m pretty sure saved my life. I’m damned if I’m going to start hating it now. Which leads me on to:

3)      Work on being OK with my weight. I do like my body, I do. But sometimes it is hard not to look at the scales and think ‘oh, hooray, I’ve lost some weight!’ or feel down when I try on jeans and realise I need a size up again. I, like most women, have spent my life being told that being thin is good. Thin is pretty. Thin is in control of your impulses. Thin is healthy. All of that? I refuse to believe it, largely because it isn’t true. So I’ll be reading Shapely Prose this year and working more on my self esteem.

4)      Try High Intensity Training. I have some kind of stomach problem which means that about 70% of the time, I’m nauseous. If I do any exercise, even so much as walking up stairs, I’m guaranteed to be nauseous. At the same time, I’m aware my fitness is terrible. I really want to improve that – I want to start horse-riding again and to be any good I’m going to need to be fitter. I’m hoping HIT –  where you exercise hard for a few minutes, rest and then repeat the exercise – a few times a week will help me achieve that with the minimum amount of nausea. Plus my gym has a sauna, and if I’m there, it seems rude NOT to go relax for a while…

5)      Keep on smiling. Like I said, 2012 has been a really great year for me. I’ve had no episodes of severe depression. I’ve managed some really tough situations (like being nauseous constantly for seven months) without allowing my jerkbrain to win. I’m really proud of how well I’ve been for this year, and I want that to continue. So my last small change is to keep putting myself first. To keep looking after myself as a priority, not a luxury.

So, there you have it. My not-resolution resolutions. And here’s to 2013. Let’s make it a good one.

Get fit or go home: Natural Selection 101

This post comes courtesy of Katz, who commented on Elodie’s blog and instantly made me think of my Biology teacher back in sixth form, who used to literally shout the words ‘Nature abhors a vacuum!’ at us whenever we asked why something was the way it was. Liam, I tip my hat to you. And, I am so sorry for all the scientific errors I am probably about to make.

“Survival of the fittest” is one of those ideas which is beautifully elegant, easily memorised and so so often misused. Fittest, as Katz points out, does not literally mean fittest. Nobody is lining up our genes for a weightlifting competition, guys. I mean, thank God, because as of today I have been nauseous for 6 months, I have a sore right hip, a left knee that occasionally locks up for no reason, and depression. If it’s survival of the fittest literally, then I am screwed.

So what does survival of the fittest actually mean? Darwin, god love him, did not actually coin this phrase. He used the phrase ‘natural selection’, which is far better. Herbert Spencer is the daddy of the words ‘survival of the fittest’, saying “this survival of the fittest, which I have here sought to express in mechanical terms, is that which Mr. Darwin has called ‘natural selection’, or the preservation of favoured races in the struggle for life”. OK. So we see here that there is a) lots of scope for being racist in natural selection (I am not even going to attempt to deal with that, as I am horribly unqualified for the job) and b) that this is about ‘the struggle for life’ and being either ‘favoured’ for that struggle or not ‘favoured’.

Scientifically that means that natural selection and survival of the fittest is about whether or not you, as an organism, are good at the job you have evolved to do*. Now, that job can be being a cheetah, where you want to be able to run fast, catch things and then have babies. It can be being a sloth, where you want to be able to hang out in your tree and not get eaten, eat really slowly and then have some babies. It can be being a virus, where you want to be able to get into a host, not get eaten by their immune system and then reproduce.

Sensing a theme? Survival of the fittest is about three things: a) eating, b) not getting eaten in turn (or dying some other way) and c) having babies. That is literally it. To be successful as an organism, you want to pass on your genes, so those are the three things you need to do. Preferably you want to have two babies, and you also want those babies to survive until they have babies and so on.

Being ‘fit’ is about Liam’s favourite phrase – filling a vacuum. Take bindweed, that annoying plant that grows everywhere and is damn near impossible. Bindweed’s vacuum is: here is some poor soil and a scaffold of other plants with nothing growing on it. Bindweed comes in and uses that scaffold to get it to the sunlight and to choke off the other plants, reducing its competition for that poor soil.

Or take us. Our vacuum is: here is a tricky place to live, and therefore nothing living in it. We evolved to be good at living in tricky places, by being adaptable and having big enough brains to figure out solutions to tricky problems and then sociable enough to crowdsource those solutions and look after each other.

So why are we so keen on fit meaning ‘fit as in goes to gym and goes rrrawr like Hulk’? Well, I’m guessing it has something to do with that old nut, sexism. As a society we’re pretty invested in the idea that maleness – traditional muscle-bound, feelings-light – maleness is superior to wishy-washy feelingsandcuddles femininity. What we’re missing is that all the variants in between have worth. Bindweed is about strength and out-competing the others by brute force. Equally successful, though, is moss. Moss just quietly sneaks in, takes up a few nutrients where it can get them and then grows. It out-competes by being good at living where nothing else wants to, and then just growing slowly and surely. In social animals being fit for purpose might well be being soft and fluffy and looking after the babies – take bees. Genetically identical, and yet each bee has its own purpose. The fighters couldn’t survive without the nurses, and they couldn’t survive without the workers gathering nectar and making honey patiently.

If we insist on looking at only those organisms that are traditionally strong and fierce we’re missing out. Far more interesting is the whole – the beautiful, nuanced, inter-dependant whole.

*Liam, my old Biology teacher, would really like me to point out that evolution is not aiming for any particular thing here. Evolution is just picking the organism that survives and reproduces better than the organism next to it. None of this is concious. Suggest that it is and to this day I worry he’ll materialise beside me and DEDUCT MARKS.

Cold blood, hot blood and ladies in crime fiction

Good evening all! So far I have blogged about science, disability and running away from you all. So in the interests of having lots of topics not really related to one another, have some fiction!

I am a huge crime fiction fan. This is not always an easy thing to be, given that a ton of crime/thriller fiction appears to be based on having the pretty ladies die spectacularly and then getting Clever Gentlemen in to Solve the Mystery. Given that I like to read books in which ladies do more than simply a) die prettily and b) get sexed I sometimes…struggle a bit with finding new things to read. So this list is as much for me as anyone else!

Without further ado, I present to you…some awesome ladies being awesome/dead.

1) Karin Slaughter’s books. There are two series here, which become one eventually. Both are truly awesome. Her first series, the Grant County series, features two ladies –  Sara Linton, paediatrician extraordinaire, and Lena Adams, more than a little screwed up but still Chief of police Jeffrey Tolliver’s best detective. In the second series, which are set in Atlanta, the two recurring ladies are Faith Mitchell, excellent detective and great daughter/sister, and then (again) deeply messed up but amazing detective Angie Polanski, the on-off lover of severely dyslexic and functionally illerate Will Trent, who ends up partnered with Faith. All Slaughter’s characters are brilliant and she handles their various issues sensitively and with great understanding and portrays them sensitively and intelligently. Her women are strong and complex, and incredibly human. She doesn’t back down from giving them flaws and problems and neither does she make that all they are.

2) Dorothy L Sayers – I mean, please. Clearly Sayers is amazing, nobody needs me to tell you that. English peer with monocle solving crime? Yes, please! Add in witty, pithy dialogue, the fabulous butler Bunter and you are onto a goer. Just look at how popular the Jeeves and Wooster novels are – clearly we Brits still love our period posh people doing hilarious things. But Sayers is more than just AWESOME POSH BLOKE SOLVING CRIMES. There’s also his mother, the Dowager Duchess, who speaks at the speed of light and enjoys non-sequiters. His sister Lady Mary is also lovely, and over the course of the series she grows up a lot – from the tearaway little sister to independent woman choosing to marry beneath her to the horror of her more conventional relatives and delight of her big brother. But the star of the show is Harriet Vane, lady detective novelist, who is first introduced while standing trial for the murder of her former lover. She didn’t do it, of course, and Peter decides to find out who did. I’ll be honest, the Peter of this novel is not my favourite. He proposes to her in a prison cell, for chrissakes. These are not the circumstances likely to make a lady think you want her for her, and not for her sexy body or scandal factor. Over the course of the novels he does redeem himself though. I won’t tell you how things wind up, obviously, but the journey is well worth following!

3) Elly Griffiths – Griffiths’ fantastic books star the wonderful Ruth Galloway. Ruth is literally the only fat woman I have ever read about who hasn’t been presented as a figure of pity. Her being fat is simply one facet of her personality, as much as loving archaeology and being an introvert are. But Griffiths isn’t afraid to address some of the issues that come with being a fat woman in a male-dominated environment (first academia, then in Ruth’s involvement with forensics). Ruth does have moments of wishing she were skinnier, and ‘prettier’ and ‘sexier’. And that’s why I love these books. Yes, the plots are amazing and the crime aspects novel and interesting, but I love them because they were literally the first novels I’d read where a woman was presented as a whole damn human being, and a fat one at that.

4) Jane Casey – this is a new author for me, but I am really really enjoying her books. Again, brilliant women, plots that go beyond the simple ‘blood, and lots of it’ and address less sexy topics like what happens to victims and relatives.

5) Kathryn Fox – also a new author, so this is a slightly qualified ‘try this out!’. I am loving her storytelling, and I really enjoyed the way she took on ethical issues around rape investigations in ‘Without Consent’ but I haven’t read any of her others yet! I will definitely be doing so.

So, there you have it. 5 authors I think write brilliant crime fiction with great ladies in. If anyone has any recommendations for me, I will give you my eternal love in return. Now is the time to say! I got book tokens for my birthday!

Author note: This post used to be called “Cold blood, hot blood and two X chromosomes”. I changed the title because, frankly, I’m ashamed of it. It was deeply transphobic and I never should have written it. My apologies to anyone I insulted or hurt by it.

‘But you’re not disabled, are you?’

Actually, yes I am. But the path to seeking and getting that label has been long and twisted for me, and it’s thrown up a lot of really interesting questions about ability and disability.

As some background: I have severe, treatment-resistant depression, and have done my entire life. It’s been diagnosed for four years now, and I’ve been in therapy for two and a half. And yet until very recently I have never called myself disabled. In fact, even typing that makes me want to roll my eyes a little. I’m not disabled, surely? I can walk and run and jump, and I don’t have any learning difficulties. I don’t need daily assistance to live my life, I don’t use or need any special equipment. It is truly bizarre the things I consider to be ‘real’ disabilities.  But I am far from alone.

Most people I’ve told that I’m seeking Disabled Student’s Allowance have been supportive, but a significant minority have asked me if I’m ‘really disabled’. They don’t mean to be cruel. They are, in some cases, simply worried and upset for me, that I am facing these difficulties in my life. In other cases, they are unaware of just how much my mental health disables me. And remember that I have only told the people I feel sure would support me, and have still had that response. There are many other people I know who have openly told me they don’t consider depression to be a ‘real illness’. There are others who have said, or implied, that I should just ‘get over it’, ‘worry less’, ‘focus on the positives’. In the face of that, is it any wonder that I have taken my time in seeking a piece of paper that calls me disabled?

There have been other bumps in the road. Last month, I applied for a blogging position with my university and was turned down. Is this the first of many times in which I will look at the words ‘due to your personal statement’ and wonder if they’re code for ‘you ticked the box saying you’re disabled’? I hope not. But I also don’t think I’ll be ticking that box with much ease, if at all, in the future. I’d never done it before. It’s opened the doors, if only a crack, into a new and unfamiliar world for me.

So why am I writing this? Why am I outing myself to a whole new bunch of people? Because my disability (and I’m calling it that) is a part of me. I’m lucky. I can hide, I can ‘pass’ as someone who isn’t disabled. But in ‘passing’ I’m denying a part of myself the chance to be recognised. I don’t want to do that. I want to stand up and be counted. I want a chance to show people like me that disability is not a source of shame. That you don’t have to need special equipment, or be visably ‘different’, or have obvious needs to be disabled. Disability, it has been brought home to me, wears many faces. I’m one of them. Hello.

Why studying genetics sometimes makes me sad

I love genetics. Its complexity, its beautiful elegance, its potential to provide critical information that will revolutionise medicine…I love it. But studying it over my years at university has frequently made me sad. And sometimes, it’s made me furious. Why? Because time and time again, genetics reminded me that so many parts of it are incredibly ableist.

“Fragile X Mental Retardation”, “characterised by retarded growth”, “potential cure for autism”, “of course, the schizophrenics are more likely to have their kids adopted”…the list of examples go on and on and on. I have yet to hear intellectual disability called anything but being ‘retarded’. Wikipedia notes that it was way back in the 1960s, over fifty years ago, that the word ‘retard’ had started being used as an insult instead of simply a medical descriptor. Surely geneticists could have looked up from their books for long enough since then to notice that fact?

Some people, indeed a lot of people, would ask why a simple word matters enough for me to bother to write a blog post on it. Why? Because words have always mattered, that’s why. Think back to those kids at school who yelled taunts at you. Remember just how much a simple word mattered then. And now imagine that it isn’t just some kids at school for a few painful years of your life. Imagine that it’s the doctor, describing your child to you and telling you why they will struggle more than the average child. Imagine it’s people yelling it at you, or at your child, or your loved one, as you walk past them in the street. Imagine that it’s something you hear every day. Imagine that it’s a word you associate, as we all do by now, with stupidity, and something faintly distasteful. And now think back to that doctor, saying ‘you have fragile X mental retardation syndrome’ and think how that would feel. Think how it would feel every time you heard anyone say the word ‘retard’ casually. They would be talking about you.

Now tell me it’s not worth talking about the use of the word ‘retard’.

As scientists, I think we have a duty to acknowledge the problems with, and the power of, our word choices. I think we have a duty to acknowledge the agency of those with the disorders and atypicalities we so casually assume must be in need of a ‘cure’ (Did you know that when a group of autistic people were asked what they thought scientific research should focus on, they didn’t even mention a cure?). I think we have a duty to acknowledge that all people, even those with mental illnesses, have agency. And I think genetics has done a poor job of this so far. We can do better, guys. We really should.


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