Experience Is To Be Lived

Reflections on life as a [relatively privileged] minority status collector

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The Fault Is In Our Stars


Why is it that some difficulties people experience get them instant sympathy, and others they find themselves blamed for?

If you are unfortunate enough to suffer from mental illness, whatever form that takes, you will probably be aware of the stigma that comes with it. It took me several years, two ended relationships, and ultimately making concrete plans to kill myself on the second anniversary of my mum’s death before I accepted that I needed to get some help, and so many people I’ve spoken to have experienced similar reluctance to seek some kind of treatment.

It took me several years, two ended relationships, and ultimately making concrete plans to kill myself on the second anniversary of my mum’s death before I accepted that I needed to get some help.

Why do we refuse to seek help? If I have an infection which isn’t shifting after letting my body fight it for a few days, the pain wins out and I go to the doctor. If someone’s tooth is hurting when they chew, they take a trip to the dentist and generally accept whatever treatment they’re told is needed. For some reason, though, when it was my emotions which ‘hurt’, I resisted the help which was there waiting for me – even though my usually pretty high pain threshold had given way to pain so extreme that I wanted to escape life itself. It was pain of a very different sort, for sure, but pain nevertheless.

I decided recently, after a bit of consideration, to be very open with my Charityworks cohort, mostly because I knew that if any group of people would be understanding, it would be them. I had been starting to experience symptoms of depression returning, so rather than going out to a club with them over the weekend a few weeks ago, I made my excuses: I need to take more care of my mental health at the moment to avoid my depression taking hold again. Had I had the ‘flu, I wouldn’t have thought twice about stating that as my reason for not joining them, but because it was a reference to my mental health, it felt somehow more vulnerable to admit to my ‘weakness’.

Mental illness is seen by many as just that: a sign of weakness. Society says that if something is wrong with your emotions or your mind, there’s nothing truly wrong with you; you just need to buckle up and get on with life, and stop seeking attention. It’s not a ‘real’ illness with pathogens and bacteria and stuff.

They all look happy and healthy, but it's statisically likely that one of them is suffering from some kind of mental illness.

They all look happy and healthy, but it’s statistically likely that one of them is suffering from some kind of mental illness.

The statistics are scary, though. According to research published by the Mental Health Foundation in 2007, one in four British adults will suffer a mental health problem in any given year – that’s 25%, a quarter – and between 8% and 12% of the British population (of any age) suffers from depression, the most common form of mental illness, in any year. Clearly, this is not a rare thing, and there is very little chance that you do not know a single person suffering from a mental illness, whether it is diagnosed or undiagnosed.

Let’s compare this with cancer, another illness ‘close to my heart’ (in a manner of speaking). It’s a fair comparison, I think, because in the same way that there are many different types of mental illness grouped together within that overarching category, there are hundreds of ways that cancer can present itself. According to the Cancer Research UK website, there were more than 331,000 cancer diagnoses in 2011 in the UK, and that obviously doesn’t include the people already living with (or dying from) cancer at any given time. Of different types of cancers, ‘breast, lung, prostate and bowel cancers together account for over half of all new cancers each year’, which means that, between them, this big four hit approximately 165,500 people afresh in 2011. These figures are far lower than those of mental illness, and yet we hear much more about cancer than we do about mental illness.

Meet the Smith family. They’re having a bad year this year. Aunt Bertha was recently diagnosed with breast cancer. Last time they all met up for a family meal, much of the talk was about how Aunt Bertha’s breast cancer treatment is going. Poor Aunt Bertha. What hasn’t been mentioned is Aunt Maude’s ‘episode’. Aunt Maude has bipolar disorder; after struggling for a long time, though, she has just braved the trip to her GP, and has started medication and talking therapy. She’s feeling a bit better now; thanks for asking.

If you get cancer, it’s the natural world ganging up against you; if you get a mental illness, it’s your own mind ganging up on you, and you just need to be more firm with it.

OK, that’s a bit of a sarcastic rant, and cancer is certainly not dinner conversation for everyone, but there is much less stigma attached to it nowadays than there is to mental illness. Why? The common attitude, going back to the point earlier about the latter being seen as a sign of weakness, seems to me to be that cancer is seen as an evil, physical force acting against your body, and there’s no way that you personally could have dissuaded the tumour from growing once the cells decided to mutate, but mental illness is a state of mind, and therefore you could prevent it in the same way that you can stop yourself thinking about sex at a funeral or death at a wedding. If you get cancer, it’s the natural world ganging up against you; if you get a mental illness, it’s your own mind (i.e. yourself) ganging up on you, and you just need to be more firm with it.

It occurred to me, pondering on all of this, that mental illness isn’t the only situation where society commonly views misfortune as being at least in part the fault of the person suffering it, though. Another example is that of sexual abuse and rape. All too often, victims of sexual abuse (usually women, but not always) are seen in some way to be complicit in their own abuse, whether that is because of what they were wearing, where they were walking, what they had been drinking, to whom they had been speaking, or a plethora of other terribly incriminating factors. Part of me is incredulous when I hear comments like these being made, and another part of me is insulted and sickened.

When I was nine years old, my parents’ famous hospitality was called upon. A friend of a friend needed somewhere to stay for a Jewish festival, and we had a spare bedroom in our house, so the man was welcomed as a guest and made to feel at home. He decided to make himself too much at home, and spent an afternoon in my bedroom. As an affectionate and slightly irritating nine year old, I was just glad of the fact that someone was willing to play the board game with which the rest of my family was fed up. I did not understand the significance of the other games he wanted to play, and it wasn’t until a family friend walked in that anyone knew what was happening.

'Probation for assault on nine-year-old' headline on front page of national Jewish newspaper

When you dream as a child of being on the front page of a newspaper, a reason like this isn’t really at the front of your mind.

Fast forward a year or so, and we’re at the court case. Apparently it doesn’t happen with child witnesses any more, but I was called to give evidence by video link in front of the jury, including being cross-examined by the defence barrister. Thankfully, I don’t remember huge amounts of the experience in detail, but I do remember very clearly being lead through a series of questions which resulted in the defence informing the jury that I had just demonstrated that I had pestered the man to come my room to play a board game and therefore it was not his fault. What’s more, I had apparently shown ‘some affection’ for him, which is clearly the same thing as offering consent.

Apparently that was a strong enough defence for the jury, given that he was found not guilty of two counts of indecent assault on a minor. That, despite the fact that he was being treated for known paedophilic tendencies, and was found guilty in the same trial for having dozens of indecent images of young girls on his home PC. It certainly seems like a lot of circumstantial evidence to me, but because a trained barrister was able to ask questions which lead to the nine year old victim affirming that playing a board game in a bedroom was her suggestion, enough blame was foisted on to the victim to allow the perpetrator to walk free, and for that victim to believe still that she was somehow at fault until well into her twenties.

Poor man, led astray to paedophilia by a seductive nine year old.

Poor man, led astray to paedophilia by a seductive nine year old. Let’s just pause to think for a moment about the ostracism that he’ll suffer as a result of the trial. (And yes, that was also an argument used.) The girl’s recurring nightmares are nothing compared to that, and there was clearly no loss of innocence as a result on her part, because she was already a slut. Nine year old slut.

(As it happens, the same man has since completed at least one short prison sentences for another, more recent, instance of having indecent images of young girls on his computer, and my mother once told me that she’d been inundated with phone calls, emails and letters from other parents who said he’d abused their own child but there hadn’t been enough evidence to take it to court. One woman apparently even contacted her from Australia, where the family had relocated to in order to make a fresh start. I don’t know of his current whereabouts, and half hope that the Grim Reaper has paid a visit; the last time I heard, though, he’d been shunned from several synagogues but was still lecturing to undergraduates at Oxford University.)

There is something terribly, terribly wrong with a culture in which anyone other than the instigator of sexual abuse is seen as being in any way responsible. Whatever the circumstances, a person’s body remains theirs and theirs alone, and however they present it to the outside world, this is not changed. If that body is walking down a street alone at night, it is theirs with which to do that, and they are not to blame if they are sexually assaulted. If that body is wearing a revealing or tightfitting outfit, it is theirs with which to do that, and they are not to blame if they are sexually assaulted. If that body has consumed more alcohol than it has a tolerance to, it is theirs with which to do that, and they are not to blame if they are sexually assaulted. It may be unwise to do these things, but from the perspective of ‘protecting oneself from sexual assault’, the protection is only needed because there are other people who feel incorrectly entitled to those bodies. The only person responsible for sexually assaulting someone is the person who does the sexual assaulting; there is no justification for reducing an adult male’s responsibility for sexual assault simply because the body he assaulted belonged to a young girl who had permitted him to enter her bedroom (for whatever purpose). What does that young girl even know about the more nefarious activities that could take place?

The only person responsible for sexually assaulting someone is the person who does the sexual assaulting.

So why does society seem to have this penchant for feeling that some people are responsible for personal suffering over which they have no control? Before I try to answer that, I want to bring one more example forward for consideration.

An individual’s sexuality and their gender identity are two of the most personal things that could possibly be discussed. Non-tangible as they are, almost by definition it is impossible to discuss or measure them in an empirical manner, although there are plenty of scientific, psychological and sociological studies into gender/sexual self-identification and outward presentation. We certainly do not yet seem to understand why some people are attracted to the same gender, other people feel innately that they have been born with the wrong sex, and yet others cannot associate themselves with either pole of the gender binary. All we can do is accept that this is the case and try our very hardest to empathise with these individuals, even though they go against every human urge to categorise and classify the world in which we live.

There are many people, however, who go to great lengths to argue that these identities are actually chosen by the individual. The argument generally goes that humans are assigned their gender based on their sexual organs at birth and are by nature attracted to the opposite sex – generally, but not always, based on a religious foundation of ‘God created you as a woman, and so you are a woman’ and ‘Adam and Eve, not Adam and Steve’, respectively. Some form of depravity or penchant for attention seeking, though, makes certain people choose to get down and dirty with people of the same sex or claim to be a different gender. If it is chosen, then, they say, these individuals could re-choose if they so wished, and therapy or external pressure might be able to make them do just that.

Does he? Really? So don't smoke.

Does he? Really? So don’t smoke.

It is often these same people who hold negative opinions towards trans or non-heterosexual individuals. Attitudes range from the religious (‘it’s against God’s will’) to the biological (‘it’s unnatural because it doesn’t allow for reproduction’), from the psychological (‘it’s an expression of formative experiences in childhood’) to the sociological (‘it’s just a reflection of the crowd you fell in with’), with a special mention for the downright intolerant (‘it’s disgusting and I don’t like it’). That last one’s my favourite. What seems to be a common trend, though, is the development of these attitudes:

1)      being that way is a choice;

2)      that particular choice is one which the bigot would not make;

3)      that particular choice is wrong, because the bigot would not have made it;

4)      the subject of bigotry should not have made the wrong choice;

5)      the person deserves to be condemned and punished, because they chose to do something wrong.

I’m not going to expend my energies picking apart the fallacies in this argument, because there are just too many ‘is to ought’s and assumptions that subjectivity can be converted into objectivity. I also willingly admit that my use of the words ‘bigot’ and ‘bigotry’ demonstrates a bias on my part. Nevertheless. What I do see is that, with very little adaptation, this same argument seems to be used in the two examples of victim-blaming I looked at earlier (mental illness and sexual abuse).

What we see in victim-blaming is that it is often easier just to deny honest expressions of pain and reflect them back towards the sufferer.

Why is it, then, that these individuals who experience or have experienced so much suffering continue to be blamed for that very suffering? I don’t know if I have a complete answer, because this really bewilders me. All I can think to say is that it comes down to a fear of that which is different or unknown. People who have not personally experienced a particularly challenging scenario, whether that is suffering from mental ill health, having one’s autonomy over one’s own body violated, or experiencing discrimination based on their non-normative sexual or gender identity, cannot truly understand the pain involved. If those people are unable to exercise even a degree of empathy, it is often easier just to deny honest expressions of pain and reflect them back towards the sufferer. I think, perhaps, that this is what we see in victim-blaming.

I look forward to the day when we are so good at recognising people passing unfair judgements that we can call it out when we see it in others and in ourselves. Maybe, one day, we can put a stop to society’s tendency to pour salt on the wounds of those whose stars simply conspired against them.


I am not, in any sense, saying that having a non-heterosexual identity is a form of suffering, nor that it is comparable to sexual abuse or mental illness, because one is not a ‘victim’ of gayness or any other form of non-normativity. The thing of which one is a victim is the discrimination based on this at the hands of the intolerant, and the thing for which they are blamed is the fact that they ‘choose’ to experience that discrimination because they have ‘chosen’ to be the way they are.

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What’s In A Name?

It surprises many people I encounter for the first time, but I am actually relatively new to the ‘soapbox’ sector.

Don’t get me wrong, I’ve always been opinionated (as my family will, I’m sure, readily attest to), but it was generally petty childish strops over whether it was my turn or my brother’s to do the washing up. No, developing opinions about things which actually affect people’s lives in a significant way is a fairly recent thing for me (and I’ve certainly got a long way to go yet in terms of putting forward watertight arguments, which is why I’m going to stick for the most part just to talking about my own experiences on this blog).

What all of this means, though, is that terms like ‘lived experience’, ‘self-identify’, ‘survivor’, ‘liberation’, ‘privilege’ and so on are all phrases that I used to turn my nose up at as psychologists’ politically correct namby-pamby. Even now, certain terms I feel more comfortable with than others. I’m not entirely sure what my turning point was, but I guess that dating a pseudo-Communist for a few years, going to a pretty liberally-minded university (which is funny, given that it’s a Jesuit place!), and being ‘BFFs’ (her word, not mine) with the biggest soapbox-er of them all will all have an effect. Anyway, the long and short of it is that I basically had to learn a whole new vocabulary, and I’m still having to expand it as I go along.

I had to learn a whole new vocabulary, and I’m still having to expand it as I go along.

Something that was probably a fairly large turning point in my involvement with liberation issues was being told at one point during my first year of university by the aforementioned BFF that I was a bigot. The context was a conversation about gender self-identification, and I had just expressed the view that if a person is assigned a gender at birth, based upon their genitalia, they are wrong to question/challenge that, unless they were born a hermaphrodite (in which case the doctors had a 50/50 chance and could have guessed wrongly). Had the ‘bigot’ criticism come from anyone other than her, I would probably have got offended, got annoyed, and then brushed it off, thinking ‘how could I, of all people, be called a bigot? I’m really open-minded!’ Given the circumstances, though, it planted a little seed in my mind, and after a couple of years of meeting people at university and in general life, I came to realise gradually how important self-identification (not just in terms of gender, but also disability, sexuality, ethnicity and so on) really is. No one has the right to look at a person and judge based on what they think they can see in front of them how that person feels about themselves. People looking at me see no disability – which is hardly surprising, given that it’s an invisible disability – and if I had left it to what they see, I’d never had completed a university degree. Even more, I’ve had instances in the past where people have deemed my RSI as ‘not a proper disability’ – presumably because they can’t see a physical aid or physical abnormality – and my reaction has been to ask them whether they would like to live with it for a day and then come back to me to repeat what they’ve said. That’s obviously different to the discrimination suffered by the trans* community, but it helped me to empathise much more with the notion of ‘self-identification’. Happily, I don’t think I would be likely to be called a bigot anymore, at least not for something like that!

My relationship with the term ‘survivor’ is an interesting one. I only actually discovered about two years ago that there is a trend among people who have experienced sexual abuse or violence to refer to themselves as ‘survivors’ rather than ‘victims’, and it’s not one that I’ve ever fully comfortably adopted. On the rare occasions that I would speak about my own childhood experiences, I would call myself a ‘victim’ of sexual abuse, and not feel uncomfortable with that at all; now, I tend to use the terms interchangeably when referring to my own experiences, but I make a point of using ‘survivor’ if I’m talking about others with similar experiences. From a purely personal point of view, I feel like ‘survivor’ makes what I went through sound more dramatic than it was, because it doesn’t even compare with what some women survive. The issue there is that I wouldn’t say that other 9 year old girls molested by a family guest and then blamed for that abuse by the legal system experienced something negligible, but I guess there’s still a bit of a wall in my mind behind which I’ve pushed quite a lot of that entire episode; perhaps if I confront the experiences further, maybe even stop blaming myself for what happened (thanks a bundle, rape culture!), my opinion on the ‘victim’ vs. ‘survivor’ debate will change as well.

Speakers Corner, Hyde Park, London – the ultimate destination for soapbox-ers everwhere!

I really like ‘lived experience’, because I feel that it gives a really powerful tool for being able to refer to genuine and insightful accounts of any form of discrimination, minority status or general feeling of difference. One of the modules I was forced into studying at university was on hermeneutics, the theory of interpretation and understanding, and it never made any sense to me at all. (Sorry Ahmad. I wasn’t the best of students in that class…) Something that I hadn’t realised would stick with me, though, was the idea (I think from Gamader, or ‘Gadamerde’, as I called him) that one cannot detach one’s experiences from the way in which one interprets anything, because they will always play a part consciously or subconsciously, however hard one tries to be detached and impartial. Having recognised that personal experiences will colour personal judgement, the fact that they then do is not such an issue, because the person has been upfront about holding such views/biases. That seems to rub along quite nicely with the emphasis placed on lived experience, because one of the major challenges put to the idea of lived experience (or people who ‘rant’ from that perspective) is that we allow our perceptions of discrimination or marginalisation to ‘taint’ our views or make us ‘bitter’. Well, as long as we’re upfront about where we’ve been and what we’ve seen, perhaps what we can bring to the table is an account which, yes, may be biased, but will show you things you may never have thought about. I have never lived in absolute or even full relative poverty, or as a person of colour, so I could never interpret the world through the same lenses as someone with a lived experience of either of those things, but through listening to their opinions and accepting those as containing valid bias, I can come to empathise.

Only through living can I experience, only through my experience can I share, and only through my sharing can people understand.

This last one brings me quite nicely round to the name of my blog. Choosing a blog name is an important decision, because it sets the tone of the whole thing and needs to be engaging enough to make it jump out on a web search. The real challenge is that I have a tendency to come up with dreadful dreadful puns that make people tempted to lock me in a cupboard with only an MP3 player loaded with Blink 182 and Britney Spears, so I wanted to avoid that. The thing that seemed most important to me was to make sure that it was obviously about lived experience, because that’s what I feel is the selling point of this blog. When I did a preliminary search on Google for blogs about lived experience, I found someone who’d done a post criticising the term, because ‘all experience is by definition lived’, and that got me thinking. I suppose that, yes, all experience is lived, but the point is that there is a person living those experiences and then speaking about them. It’s only through the fact that people live those experiences that society can hopefully arrive at a time when people are no longer living those experiences. The speaking about them is the key part, which is what my blog aims to do. On a more personal note, the name ‘Experience Is To Be Lived’ is intended to be a constant reminder to myself that, however dark things get as a result of my depression, experience is to be lived. For now, however bad things may sometimes seem, I need to try to keep my head up, because, I hope, one day they will be better. Only through living can I experience, only through my experience can I share, and only through my sharing can people understand.