Inspiration porn

Before I get to the point, don’t be fooled by the word “porn”. This is not that kind of blog! Now do read on.

In a recent issue of my writing magazine, I read an article about how to write about disabled characters sensibly. It covered several pretty good points – person first vs identity first language, don’t use slurs, make disabled characters as well rounded as non disabled characters – but I thought I’d look at one that got me thinking: disabled people being seen as inspiring for managing the simplest daily tasks. Or, as the magazine put it, inspiration porn.

For a start, I should probably differentiate between validating someone’s struggles and achievements, and inspiration porn. We all survive tough times, and accomplish things that we’re proud of, and chances are, we appreciate it when people understand our struggles and admire our achievements. I don’t know about other people with disabilities, but for me, being autistic doesn’t change this.

Then you see articles on the Internet about people with physical disabilities, learning differences, etc., depicting them as being an example to everyone just for getting through life with their condition. Maybe they’re shown doing a normal activity that may or may not be harder for them, leaving everyone amazed that they managed it at all. I remember people at school saying they felt sorry for me because of “that thing” I have. Or they need help or friendship, someone offers it, and suddenly that person is a saint. It seems that everything the disabled person does is either because of, or in spite of, their disability.

Now I understand these reactions are well meant. There are things that are harder to manage when you have a disability or illness. Showing kindness to someone who has one is a good thing. But there will be many things in a disabled person’s life that are just routine to them and/or are unrelated to their disability. We don’t exist solely to inspire others by managing these things. Like pity, showering someone in praise over the smallest thing implies that you don’t expect them to be that capable.

I remember I once touched upon a similar topic: being kind vs being patronising. I said that pity is feeling sorry for someone just because of the way they are, as if that makes them lesser. Sympathy is understanding what someone is going through and supporting them accordingly. Perhaps you could compare it to attitude towards race – I don’t want or need to be pitied or admired for being half Taiwanese. On the other hand, I’m sick to death of racist catcalls, and the more people understand why this bothers me, the better.

Do you see? Stories about disabled people making any kind of achievement may be heartwarming, but to truly appreciate the things someone has mastered, you have to get to know them like any other person.

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Am I autistic, or do I have autism?

Am I a brunette, or do I have brown hair? Am I tall, or do I have long legs? You get the point. No? Ok, I’ll explain.

When talking about autism, some people prefer person-first language – that is, saying “people with autism” or “people who have autism”. They say that doing so identifies a person with autism as…well, a person first and foremost, and that their condition shouldn’t be the first thing that defines their identity.

Other people prefer to say “autistic people”, which is known as identity first language. They see it as being a part of their identity that shouldn’t be brushed to the sidelines as if it’s something to be ashamed of, and some autistic people feel that person-first language does just that.

This issue doesn’t just apply to autism, by the way. I’ve heard opinions on this from people with other social and learning differences, physical disabilities, and chronic illnesses. But having had no experiences in those departments, I’m going to focus on autism.

And on that note, what’s my take on this?

Honestly, it’s not something that ever occurred to me to have any strong feelings about. To me, they are just different ways of saying the same thing. If I’m talking about myself, or just generally, I will use whichever one pops into my head. Don’t get me wrong, if a person on the spectrum – or with any other condition – said they have a specific preference, I will respect that and use whichever way of phrasing they are more comfortable with. But I don’t want to be told by a non-autistic person how to describe myself.

To me, the exact phrasing someone uses isn’t as important as the bigger picture of how they treat me. Whether they talk to me like an adult or a child and whether they approach me with an open mind or preconceptions say more about how they see me than whether they say the A word first or second. Asperger’s Syndrome is a form of autism that is equally part of my identity and not all of it.

Besides, it doesn’t need to be mentioned every time you talk about me. I’ve heard people tell stories about their “autistic child” or their “friend with autism” in which the condition is of no significance. It’s one thing to mention it if it’s relevant to your story, but if not, I would rather just be known as “your child”* or “your friend.”

To conclude, I feel I should add that I do not see my stance as being any more right than anyone else’s. It’s just how I feel, and I think we should all be free to describe ourselves the way we want, without feeling like we have to conform to the same preference. I see both sides as being valid and personally feel disinclined to take either one. I am autistic. I have autism/Asperger’s. It’s a fact. But it doesn’t define me.

 

 

*If you are my mother or stepfather. Otherwise that would be creepy.

Is knowledge too powerful?

When I was 14, my parents – usually individually – and I often read together, and one particular book I remember reading with Mum was If Cats Could Fly. In hindsight, it sounds like a disaster waiting to happen – do we really want cats to be able to reach the top shelf of the fridge effortlessly? – but it actually had quite a profound theme.

Picture it: a couple of aliens who have just crash landed on Earth grant two cats the ability to fly. The cats have a heck of a time at first, but because they can go wherever they want now, it’s not long before they are exposed to harsh realities of the world such as factory farming and destruction of the environment. Not surprisingly, they quickly succumb to despair at knowing so much and being powerless to change anything.

What got me thinking about this was my participation in a toxic habit that is all too common in millenials: scrolling through Facebook. I was seeing all these posts and articles that seemed to serve no purpose but to stir up hate towards people of opposing views. Statements about what God apparently wants to happen regarding Brexit. Warnings against getting too friendly with LGBT people. Prejudice towards vegans. You get the picture.

We have more access to knowledge now than ever before. Thanks to the internet, it’s so much easier to spread awareness of issues that, up until now, people have been ignoring. We can make our voices heard, and get closer glimpses of other ways of thinking and living.

But of course, there are two sides to every coin. Now we are more vulnerable. Now it’s easier to tear each other apart over a simple disagreement about a trending topic. We can so easily become both perpetrators and victims of misinformation, because now, stories don’t have to be authentic to be made public. We read things that are toxic to our emotional wellbeing – from prejudiced articles on why people like me are sick to posts saying people in (insert minority) should just deal with it – and then we keep coming back for more.

Well, I do. No, I’m not proud of it.

Do you see the connection? Easy access to knowledge can be a great thing in many ways, but does it also expose us to the darker side of people and the world we live in? People complain that we have less freedom of speech than before, but I think the opposite is true. We have more means of expressing ourselves, and at a time when more people are being given a chance to be heard. And that’s where divisions arise.

Self care

I have had many conversations recently about the importance of self care. With friends struggling with their health, or who have had to support someone who is. With friends who have a demanding workload and are simply trying to find enough time to eat and sleep. Most of all with my mother and stepfather, who have been through a lot, taken on a lot, and still supported me a lot.

My life is about as full as it has ever been. I’ve got a job which, including the commute, keeps me out for 11 hours every weekday. I take Chinese evening classes on Thursdays. Choir on Saturdays. Gym, cooking, writing, and blogging when I have time. I’ve found a church where I belong, with a worship band I’m in once a month. Suffice it to say I’m very lucky indeed.

The thing is, though, it’s time consuming. Plus at work, however easier things are now, I still struggle with being an autistic person surrounded by neurotypicals. I also don’t get much time to either exercise or rest. In the limited amount of time I spend at home, I’m usually exhausted. And I’ve come to realise the importance of looking after my mind and body. Like so:

  • Earlier bedtimes. Despite feeling uncool next to people my age who thrive on long nights out, I’m stricter with myself about this. I’m a light sleeper, I hate being overtired at work, and I have a 7:30am bus to catch. Now I try to get into my pyjamas at 9:30pm, with minimal screen time or work for 30-60 minutes beforehand. It’s a small difference, yet I’m much less sleepy in the afternoons.
  • Healthier lunches. I’ve started having salad for 3 out of 5 work lunches, and at the risk of sounding like a snob, I genuinely enjoy it. I keep up the sandwiches and random snack lunches twice a week for the variety, but increasing my vegetable intake while reducing refined carbs and sugar does help me feel better in myself.
  • My work routine. I have at least 2-3 scheduled water breaks (not counting lunch) during the day, especially the afternoon. It keeps me moving as well as drinking, and helps me stay alert.
  • Emotional support. If I’m stressed or unhappy, I need a mix of alone time and emotional support. I keep a couple of hours to myself everyday regardless, and when I need to be heard, I’m lucky enough to be able to chat with my parents, or message a friend.
  • Finding something in each week to look forward to. This is hopefully about as cliched as I’m going to get. Once summer was over and I passed my probation, every day and week felt just like the last one. Before I even realised I was doing it, I began thinking about each upcoming week, and what made it even a little special. One week it was visiting family. Another, it was a new book coming out. Next week, it’ll be the first day of advent. Bring on the countdown to Christmas!

As much as I feel like an old lady, trying to go to bed at 9:30, self care is a key part of staying healthy. If you look after your body, heart, and mind, you can give so much more of yourself to the things you do and the people you know. So to conclude, may I ask what do you do in the way of self care?

Autistic frustration

One of the many assumptions I’ve had people make about me is that I must be prone to anger outbursts. I don’t remember anyone saying it to my face, but I do remember Mum telling me about people who have thought that. Needless to say, this isn’t the case – Mum has always said if I was any less aggressive I’d go into a coma – but I realise it’s true for many people with Asperger’s and other forms of autism.

Outbursts are often listed as a symptom of autism, which, at first glance, makes sense. Plenty of children and adults experience this, whether due to frustration, sensory overload, stress, and many other things. But then I thought about some of the more basic signs and symptoms of autism in comparison, and I came to the conclusion that anger outbursts aren’t a direct symptom of autism. They’re an expression of built up frustration.

It sounds like the line between the two is very blurry. Put it like this: symptoms of autism are directly caused by differences in the brain. For example: overall high intelligence, but trouble reading faces and body language. Misinterpreting things people say. Different reactions to touch, and other sensory information. Fixation on topics of interest. I’ve reflected, rambled, and ranted about them often enough.

As I write this, I’m thinking about how it drives me mad when people see autism as a bad thing…while feeling fed up with it and wishing it wasn’t an issue. But in a way, that proves my point: autism doesn’t cause frustration. Having autism in a world full of – and made for – people who don’t does.

Autistic frustration is a range of issues in its own right. It comes from spending half your life having to explain yourself, and the other half needing people to explain themselves. It comes from having to work twice as hard just to keep up in social and academic settings made for neurotypical people. Having to grit your teeth when people talk down to you, or make assumptions about you, because you know they mean well, and you don’t want to hurt their feelings. Wanting to connect with your peers but lacking the know how. Then, just to top it all, not having the social skills to communicate all this.

Which, thinking about it, is partly why I blog: while my face-to-face people skills have improved, I still communicate more naturally through writing. It may feel like a chore at times, but it’s still what I do. Besides, it’s important to help people understand. I don’t expect miracles from other people, myself, or my writing. Accepting that sometimes things are different for me is what helps me be less self conscious. And if you can overcome self-consciousness, even if only a little way, you will find it easier to see beyond the negatives.

Boundaries – a fine line

From childhood until university, I used to think that the best way to win and maintain friendships was to let the other person have their own way all the time. I mean, that’s what everyone says about friends; it’s important to put the other person first. As a teenager – with Asperger’s, at that – I was never good at interpreting social rules. Though really, how far wrong can you go with this one?

It started harmlessly enough. If other children had forgotten/broken a pencil, they soon knew they could ask me for one. If we were queueing for anything exciting, I would willingly let anyone who asked go in front of me. And if I had any particularly special treats in my lunch…well, you get the idea.

I think my parents realised there was a problem when I began losing some of my stationery to people who needed it more. But who was I to complain? I was trying to be a good friend. I didn’t always like it, but I wanted to make people happy, and thanks to autism, that was the only way I knew how. My first rule of thumb was to put other people first; my second, to avoid offending anyone. And saying “no” to a reasonable request was, in my mind, the epitome of offense. Especially when people took offense if I so much as thought about it. A problem which I could never get to go away.

It wasn’t until I started trying to apply boundaries that I learned that not having them makes it harder to recognise and respect other people’s boundaries. At first glance this makes no sense – the reason many people struggle to set them is because they desperately want to please. I’ve had to learn to not be either offended or overcome with guilt when people disagree with me, or criticise me, and instead, simply work out how to change for the better. This doesn’t mean blindly deferring to the other person; sometimes it takes a bit of objective analysis of a situation to see what you could do differently.

Unfortunately, it’s impossible to go through life without offending anyone. Until I left uni, I used to think it was as simple as either keeping the peace at all costs, or showing no respect for other people’s feelings whatsoever, but it’s not that black and white. I couldn’t let go of the mindset that being a good friend meant keeping the peace at all costs, until I realised that setting boundaries isn’t unreasonable. For me, it means:

  • Not being afraid to politely but firmly let someone know if you don’t like the way they treat you
  • Being consistent in the standards you set for how you treat other people and expect to be treated
  • Being able to disagree with someone, while still showing them respect
  • Reminding the other person that their way of seeing things isn’t the only way – while remembering this principle yourself

So, to end on a saying I heard at church once, if you never say no, what is your yes worth?

Dear diary…

“Have just had my toughest experience ever: Mum sitting on me, squeezing my blackheads, with Rhian looking on!”

“Sometimes I wish time wouldn’t drag so, especially after the Easter hols…” 

Is this normal writing for a 13 year old?

My journals and I go back a very long way. Even as a kid, I loved the feeling of having a fresh new notebook, which I could decorate as frivolously as I wanted, before complaining to it about my life. And let’s face it, when you’re a teenager – and an autistic one trying not to be eaten alive by non-autistic ones, at that – there is a lot to complain about.

Actually, my first diary was more of a travel log, three days before I turned 11, just before adolescence became an issue. We were en route to New Zealand, and I was not letting a moment of our upcoming adventure go to waste. Amid jetlag from hell, day trips of a lifetime, and hours of travel by land, sea, and air, I was determined to write down everything we did. I don’t know why I wrote as if I was addressing the rest of my class at school (why the heck would they care how many bedrooms our third motel had?), but that aside, I’m glad I did it.

Since then, my journals have evolved considerably, and have seen me through nearly a decade of teenage angst, followed by my attempts at adulthood. Journaling is my main way of keeping myself writing every few days, and a testament to what a nerd I am is how I feel like I have a different relationship with each one, depending on a number of factors. Like how often I wrote. Or what stage of life I was at. Or how much written self-reflection I did. It makes me feel pretentious, putting it like that, but it’s true.

Through keeping it up, give or take a few slips, I’ve definitely benefitted a lot from journaling. For a start, it helps me remember. I love laughing at my old diaries! It also helps me regulate my thoughts and emotions, making them less overwhelming when I can see them on paper. I’ve written down hard learned life lessons, I’ve made important decisions through brainstorming, I’ve poured out my heart about many a difficult situation, and instantly felt calmer.

Most recently, I’ve come to realise that writing a diary has helped me be more honest with myself, because I can get my thoughts and feeling out without being heard. Or maybe practise getting them out until I’m ready for them to be heard. Sometimes I don’t feel like it, other times I get started and don’t stop for ages. Either way, it feels like a constructive habit, and if it keeps me writing and learning, long may it continue!

My diaries, minus my current one, two pocket notebooks, and a wad of cat shaped post it notes. Starting with my neon travel log, going clockwise, and finishing in the middle.