Representation and why it matters

Ages ago, when I was at uni, I wrote a blog post about disabilities in the media, or, to put it more concisely, representation. I was thinking largely about autism, as I often do on my blog, and disabilities in general, but actually, this is an issue for people in any minority category. Plus women (more on that here). And since uni, I have come to realise the extent of the impact that representation – or lack of it – can have on one’s identity.

Representation in the media is easy to take for granted. We see it in the storybooks and TV we grow up with. We grow attached to the characters in them because they are supposed to represent real people, no matter what species they are, or what sort of world they live in. The more characters – and real life role models – we can relate to, the more we establish a sense of belonging in the world.

The double edged sword here is this. Fiction portrays the way the creator thinks the world should be, and no-one’s perception of the world is flawless or completely accurate. So the majority of it errs towards representing just that – the majority. And the more a real-life person fits the ideals of the majority, the more likely they are to be successful in the media.

I understand why some people are more represented than others. In the UK, most people are both white and British. Most people are neurotypical and able bodied. Most people are heterosexual and cisgender. So I can see why many fictional characters and role models in the media fit those categories.

But what about those of us who don’t?

When we develop an idea of what is the norm that doesn’t match the way we are, it emphasises that feeling of being the “other”. When we see characters that do represent us in some way, it both influences, and tells us, how people see us. If they are relatable and well rounded, that feels like a pretty big deal. If they are nothing more than a stereotype, then we have to deal with the frustration of other people expecting nothing more of us.

For me, what bothers me the most is when people roll their eyes at real and fictional people in minority categories getting the spotlight in the media, and when they supposedly don’t mind people like that as long as they’re not shoving their differences in everyone’s faces. It’s that attitude of taking for granted how represented you are, and not being able to deal with the “other” getting so much as a taste of it.

To which I say: everyone deserves to feel represented, no matter how “niche” their life experiences are. It not only educates the world, but also reduces the sense of shame that comes with being seen as different. Because people who are different – in their body, brain, race, gender, sexuality – are real. And real people from all walks of life deserve to feel heard.

Fear fuelled racism

When Covid19 became a real worry, one of my (many) first thoughts was: how long before I have to deal with ignorant comments about my slightly East Asian heritage from passing racists? We’ve established that some people get a kick out of shouting inane things when they see I’m biracial. Surely this would only be one step up?

So far I’ve been lucky; despite my expectations, I haven’t experienced any racism myself. But does that mean it’s not an issue anywhere? Absolutely not.

Let’s be clear on one thing: disagreeing with the government, or common attitudes, in a certain country is not racist on its own. Nor is disliking practices that are common in that place. Nor is not liking food that happens to be associated with a particular culture. I’m biologically half Taiwanese. I’m descended on one side from China and I disagree with the way they handled the early stages of the outbreak. I don’t like the way many animals there are treated. Even before I went vegetarian, I’d never even encountered any dishes containing bat.

But there’s a fine line between that and some of the racism floating around on the internet. And out and about. And in people’s hearts.

I’ve seen Facebook posts making jokes about how Chinese people will eat any animals. I’ve seen comments saying things like “they are ugly in every sense of the word”. I’ve heard talk online about how China and its people should be wiped off the planet. I’ve seen responses to things like the above points saying “that’s a bit lacist!” I’ve heard people shout “Coronavirus!” at passing East Asian people. I’ve even read articles online about how East Asian people have been kicked, punched, or otherwise physically attacked. And surely none of that is as significant as some of the racism that has gone down in history?

But prejudice of any kind doesn’t start with concentration camps. It doesn’t start with mass shooting. It doesn’t start with bombing. It doesn’t start with any major terrorism. It starts with fear. It starts with unconscious bias that takes hold of people’s morals. It starts with lies, half truths, and misinformation. It starts with crude jokes and stereotypes that people quickly accept as being ok. It starts with the opinions of those at the butt of all that being dismissed as taking offence too easily and creating problems where there aren’t any. To which I say:

I am not ugly. I don’t want or deserve to be wiped off the planet (I’ve heard enough of that kind of talk about autism). I’m no more of a walking virus spreader than anyone else. I shouldn’t have to worry about prejudice over a disaster I only found out about with the rest of the UK. I am not a joke or a stereotype because of my race. I am just another human being trying to make the best out of a very uncertain and worrying time. And the more people remember this about anyone in a racial minority, the better.

Sleep, lack of it, and things that can help

I have a love hate relationship with sleep. I love it. I hate not getting enough of it. And any of the following things can get in the way of it for me: background noise, physical discomfort, any worries, emotions, or nagging thoughts that won’t go away, anticipation of Christmas Day/a social event/something big happening the next day, worrying about not being able to sleep…to name but a few.

One of the biggest causes of insomnia for me is sharing a room with another person, especially in a new place. There have been at least a couple of occasions – one recent, one less so – where I have shared a room with someone on a weekend away, only to inadvertently startle them when they woke up during the night simply by being wide awake. And it’s not just being with another person in a new place. When I went camping as a teenager, someone thought it would be funny to set off an airhorn as a prank at the crack of dawn. At a weekend away in Blackpool I went to a few years ago, I got woken just after 2am by a woman screaming at a man, saying he would find her dead outside their room in the morning and it would be all his fault. Cheerful.

Then there are all-nighters. I have pulled exactly one of these in my life (intentionally, at least), and that was enough. I was on an Animal Management course at Brooksby College, and took part in a night of overnight lambing as part of my work experience. Picture it: a cold, damp barn in early March, and 11-12 hours patrolling the building aimlessly, fetching supplies, and watching sheep give birth. The resulting sleep deprivation made for an interesting day at college, in the shape of me struggling to hold a pen, and not remembering anything that was said to me, despite being awake. Not an experience to be repeated.

And sometimes things are rough, and sleep is the last thing I can manage. About a year and a half ago, late one evening, my mum was in a car crash. Immediately, despite text assurances from her and my stepdad that she was out of immediate danger, I sat up all night imagining what must have happened – and what could have happened. A year before that, my sister fell critically ill, and got turned away from A and E twice, only being seen to when she was at risk of dying. The night before I went to visit her, I was filled with all these scary images of her in agony, of her not surviving. At that time, I had the least to be dealing with, but that is one night I will always remember.

So how do I deal with insomnia? Here are some pointers I’ve come up with in recent years:

  • Wind down before bed. Even if it means going to bed a few minutes later.
  • If you can’t sleep, get up and do something soothing. Draw, colour, read a book. Then try again. For me, this turns a bad night into an ok night, and means that I…
  • …don’t spend the whole night feeling frustrated about being unable to sleep. Frustration will keep you awake in a vicious cycle if you let it
  • Try not to look at the time during the night unless you are sure it’s nearly time to get up. Doing this only makes me more stressed about how much more time I have to sleep
  • If unwanted thoughts, feelings, or worries are keeping me awake, I journal them. This helps me to look at them objectively and, where applicable, make decisions for the next day that will put my mind at ease

So, to conclude, what are your thoughts and advice regarding sleep? Make what you like of my points and experiences, they are relevant to me, but not necessarily everyone. And then get a good night’s rest. Sweet dreams from me!

Christmas goals – expectation versus reality

  1. Expectation: Get all my Christmas shopping over and done with by mid December at the latest. Reality: I don’t know what my family wants. My family also don’t know what they want. Cue a last minute browse round the shops >2 days before Christmas.
  2. Expectation: Get loads of uni coursework done before Christmas Day. Reality: Hopefully make a start on an assignment by New Years Eve. (Note – this was during my uni years, and is mercifully no longer applicable).
  3. Expectation: Make as much vegan friendly confectionery as possible, with my various vegan/lactose intolerant family members in mind. Reality: Make a plate of marzipan fruits and call it a day.
  4. Expectation: Protect the tree from the cats at all costs. Reality: Give up trying to keep them out of the same room and just accept whatever happens.
  5. Expectation: Make some festive decorations with a good friend from work for our desk decorating competition. Reality: Break a stapler. Attempt to fix said stapler. Accidentally staple my own finger. Spend most of the evening slowly and painfully removing staple with tweezers while both of us try not to freak out.
  6. Expectation: Write a deep, carefully thought through blog post that captures the essence of the festive season. Reality: After hours of procrastinating, start writing about the first thing that comes to mind, try to make it vaguely Christmassy, then finish it as quickly as possible so as not to be late for the Call The Midwife Christmas special.

I have always thought of myself as someone who loves Christmas. I still think this, but lately I’ve come to realise how draining it actually is. My mother has been working her backside off to make this a good one. My sister is in another pantomime, and will be getting back to work tomorrow. Meanwhile I’m still getting to grips with juggling work, cooking, and other aspects of regular life with present shopping, two parties, two dinner socials, a choir performance, and a church carol service.

In recent years, my attitude towards Christmas has shifted from childlike excitement at the beginning and disappointment when the tree comes down to enjoying it while it lasts, then appreciating the stillness that follows. It’s all too easy to get so caught up in trying to make it perfect that we wear ourselves out and lose focus of what’s important. I mean, I love all the special food, and presents, and making the place look lovely. But on reflection, I realised that my main priorities are these:

  • Quality time with the family
  • A break from everyday life
  • Appreciating what we’ve got
  • Making memories

When you think about it, the first Christmas wasn’t elaborate. I don’t get the impression that Jesus was born in splendour in that cold, dark stable. And yet, as the story goes, there were gifts, and there was love. So I try to appreciate what we have, without worrying about how to make things bigger and better. And as always, find the humour in the simplest things.

Having said that, I’m still disappointed that, despite literally bleeding for my festive looking desk, this is the best I could do (see below). But at least the staple incident brought a smile to the faces of many friends, in and outside of work. And if that isn’t the true spirit of Christmas, then I don’t know what is!

Church and vulnerability

The other week at church, I heard a talk about the importance of being able to open up and be vulnerable with each other. This has been a bit of a trending topic lately, and I remember it came up a lot in my New Wine discipleship course the other year. Now I have attended many Christian talks and discussions, but this one particularly stuck with me. So after a bit of journaling, and various conversations, I thought I’d share my reflections here.

To cut a long story short, the basic principle was that it’s important to be able to share with each other our insecurities and our shame so that our outer and inner worlds match more closely. Doing that is being authentic and real, and it strengthens our relationship with God and each other. And church is a safe place for it. Right?

This is the bit that challenged me. I have had many insecurities and worries in my life, and there are still some I’m afraid to talk about with most people. I want to believe I can safely be vulnerable in the Christian community. I want to stop being afraid. And it’s easy to say that we should be able to open up to each other about anything. But not all Christians are safe people to open up to, and I think we need to acknowledge that.

In the hours and days that followed, I asked a few friends what their thoughts were. As much as I’d like to hear that the church is a 100% secure, non-judgemental community, it was reassuring to hear people agree that it isn’t always. A close friend said that we shouldn’t have to be completely open with everyone, as long as we have someone. Another said that there are some things that are just between you and God. I think these are important points. On a side note, it also reminded me of how lucky I am to have people I can tell anything to. I’m not naming them all here and now, but I don’t take them for granted for a moment.

And lastly, my favourite point came from yet another friend I shared my thoughts with last week. Rather than feeling under pressure to risk sharing our deepest internal struggles, perhaps we could think about how to make our Christian circle a safe place for vulnerability. I completely agree. It’s not that I think we shouldn’t try to be open with each other when the time is right. We need intimacy. So while we acknowledge our struggles, perhaps we could stop and think about how to be that “safe person” someone else might need. We don’t know what another person is going through, and if we can try to understand from a place of compassion, it may be a step in the right direction.

Unconscious bias

Unconscious bias is a hard topic to talk about. It’s harder to be at the receiving end. I spent months being turned down after job interviews before I got my current job. I was often last to be picked for group activities in school. I spent my teenage years and early 20s putting up with people explicitly or implicitly showing more interest in whichever socially skilled, non-autistic friends I clung to at the time. Even in casual conversation, I still have to gently correct assumptions people make about my race or my Asperger’s.

And it’s even harder to pinpoint in yourself. So you can imagine my shame a few years ago when, at a church lunch, I got chatting about heritage to another person of East Asian descent, and I asked what part of China they were from. I can’t remember the answer, but it was a completely separate, non-Chinese speaking country. Eek.

But that’s what unconscious bias is – not the morals and choices we make while in full control of our thoughts, but associations we have that we are unaware of that slip out unexpectedly. It’s natural. It’s how we make sense of the world, and develop our own opinions, however right, wrong, or in-between they are. And the point I was trying to make just now is that it happens to all of us.

It can also lead to full blown prejudices against certain groups. But the thing to remember is that unconscious bias and full blown prejudice are not the same thing. Prejudice stems from bias that takes a strong hold of conscious thought. Unconscious bias is instinctive reactions the brain makes based on how our experiences – and the people around us – have conditioned us to think.

I see it in social media articles, posts, and comments all the time. Men who have never experienced sexism or sexual harassment, and therefore don’t see why women get so worked up about it. White and/or non-LGBT people who protest that their lives matter too when they’ve never had a reason to believe otherwise, and wish people in minority categories would stop rubbing it in so much. And as an autistic person, I hate the thought that there are non-autistic people out there who claim people like me are making a big deal over nothing when we try to explain our struggles. If you have no first hand knowledge of someone’s experiences, are you really in the best place to be judging them?

So should we try to fight unconscious bias? Well I don’t think we can. I understand why people see it as shameful, and why we refuse to admit to it even to ourselves. But suppressing it won’t change anything. Perhaps the only way to keep it in check is to be aware of it. Look inside yourself at your instinctive thoughts and feelings – not your controlled words and actions – towards a person. Take a moment to wonder where those thoughts and feelings came from and how they could influence your outward behaviour. And try to drop assumptions in favour of an open mind and open questions. We may never be immune to making assumptions, but we don’t have to let them take hold.

 

I am not diseased

People on the internet have had many things to say about vaccines causing autism. I have had it on my mind for a long time now, to write about this subject myself. When I sat down at my computer today, like so many times, the words wouldn’t come. So I did something that I knew would motivate the words in me. I researched the subject. Googled articles that were written out of fear, and scoured the comments for the ones that hurt me the most. And let me tell you, it worked.

Now I am no scientist. I don’t know the ins and outs of vaccines. I don’t even know everything about autism beyond my own personal story. So whatever your stance is, this isn’t a personal attack on your opinion. This isn’t about vaccines. It’s not even about anti-vaccine arguments. It’s about the attitudes towards autism that so often lie behind them.

When people argue against vaccines, they say they’d rather they, or their children, were unvaccinated than autistic. They talk about the damage that vaccinations cause in children. About what a terrible disease autism is. And the anti-vaxxers whose autistic children have had their injections? How they knew something was “wrong” with their child in the days following their first shots.

Do they ask anyone on the spectrum how they feel about all this? Do they know how hurtful it can be to be seen as so diseased, damaged, and dysfunctional that you are better off dead?

I can’t speak for every individual. But it doesn’t look like it. So let me clear a few things up.

To those of you who see autism as a more debilitating condition than smallpox, I am not diseased. My brain is not damaged. Yes, having Asperger’s Syndrome in a world full of people who don’t is hard. Yes, I have my weaknesses. But still, there is nothing wrong with me. I am a fully functioning young adult. I am an aspiring writer. I have a job, friends, an independent life, and an IQ of about 130. And I would rather have AS than any life threatening disease.

And if you cannot change your mind, or at least don’t know where you stand, know that there are people out there who are vulnerable to your attitudes and lack of understanding. Immune to polio I may be, but immune to other people’s prejudice I am not.