Assumed Dependence & Going Backwards

Today I’m going to talk about what many would consider one of my favourite topics: independence. No, not for Scotland. Not even for Catalonia. This is about the independence of individuals, namely disabled ones.

There was an incident, probably over five years ago now, when I was in high school that proved beyond a doubt all my criticisms of my high school were warranted. I was speaking to my pupil support teacher (equivalent of a guidance counsellor for the Americans out there). I made what I felt was a throwaway comment about going to the University of Edinburgh open day, and he replied:

“Would that not be a waste of time? Your parents and I have discussed it, and we all agreed that it would be best for you to live at home throughout university, and attend Glasgow.”

Perhaps this is the moment that inspired all the times my fictional characters in writing freeze as their blood runs cold. Because that is certainly how I felt in that moment.

I had no desire to remain living at home during university. In fact, if anything, I had an overwhelming desire to not do that. But in 2013 I was not nearly as confident voicing my opinion as now. So, I let out something unintelligible and ran off down the corridor to hide under the stairs, shaking. A common occurrence throughout high school.

That evening, when I went home, I confronted my parents about them discussing my future with the teachers behind my back. My mother’s response? They hadn’t. The teacher had made it up. A blatant lie to make it seem like he had support when he clearly didn’t. And that whole day of being terrified I’d end up trapped at home forever was for nothing.

Suffice to say, I never trusted another word a teacher in that school said. I was a kid who inherently trusted authority. I am an adult who inherently distrusts authority because of what all my experiences taught me.

In the end, I defied the teachers to attend the University of St Andrews, approximately 80 miles and 3 hours on public transport (if you’re lucky) from my parent’s house. I graduated this year in June with a 2:1. I lived two years in student accommodation, and two years living with actual friends in an actual house. So, take that, Williamwood High School, with a great reputation but where I had a terrible experience.

And now? Yeah, I failed at getting a job, decided I didn’t want to settle for some well-paid but extremely boring job in banking, and now I’m back living with my parents. And despite all my remarkable achievements, that one fact makes it feel like I’ve failed in life. Because all that independence I gained? It’s been snatched away once more.

My mother feels like she can just walk into my room unannounced, harass me to get up, insists on me informing them in advance whenever I plan to go out and frowns if I get back late. I’m doing an online TEFL course so I can go abroad and teach English, but it’s taking even longer cause my father keeps inviting men to do work on the house and chasing me out (and I can’t even go where I want, always with my mother).

I feel like I have gone back in time, and I feel so incredibly trapped in my current situation. It feels sometimes like all my attempts to get out of here are being sabotaged, and just sitting in my room right now, I feel the need to look over my shoulder and check my parents haven’t wandered in despite the closed door.

There are these assumptions that autistic and/or otherwise disabled people are incapable of being independent, and while this is the case for some and that’s okay, treating those who can and want to be independent as if they are unable, and sabotaging any attempts by them to achieve that, is not okay.

I value my own independence highly. For me, all attempts to restrict this feel like an attack. I gained something remarkable over the past four years, in spite of what everyone told me and what I was taught to believe. To lose that again is devastating. I only hope that I can get out of here soon, and in the meantime, perhaps I should invest in a lock for my bedroom door.

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Summer: not so friendly for me

I have been rather consistent throughout the years on stating my dislike of the summer months. This is to satisfy those who find others complaining about the heat irritating, as people moan about the cold in winter. At no point have I claimed otherwise.

Summer, for me, is the season of flying sky needles of pain (more commonly known as ‘wasps’). I have a phobia of wasps, and their presence in the summer months markedly reduces my quality of life as I can’t go outside without being terrified, and I always have this worry they will get inside too.

To top off that, there is the heat, which has been worse this year than previous ones. I don’t necessarily mind the heat when I have nothing to do, but it impairs my focus and makes it hard for me to perform some tasks such as studying or making sense when I speak aloud in my first language.

I can go on holiday to hot places because I don’t have to do anything much when I’m on holiday, but I’d still prefer to be somewhere colder. Another side effect of heat is sweat, which can be itchy and very uncomfortable sensory-wise.

Don’t be one of those people who say things like ‘you don’t have the right to complain about the heat because this is good weather and so shut up’. Different people like different things, and different countries have different climates, meaning that what is tolerable for one person can be like the fires of hell to another.

This blog post is short because of why I’m writing it: I’m too hot to focus on stuff. Summer can be fun, but for me it can get a bit too much. For those of you who enjoy this weather, have a good time while it lasts! For the others, I hope the heat breaks soon!

Autistic Pride Day 2018 – Proud to be me

“But why are you proud of something that wasn’t your choice?”

That’s an argument I’ve heard all too often, in a number of contexts. My answer? Because it’s a part of me. And in order to have pride in myself, I need to be proud of all my constituent parts.

For me, having pride in who I am is integral to my self-esteem, which has been low for as long as I can remember. To be proud of my asexuality, my autism and other parts of me is to start to rebuild it, piece by piece.

For so long, I thought autism was a defect, and therefore I was defective. It hurt me, a lot. So being able to stand up and say I am proud to be autistic today is to begin to build back up what I lost throughout so many years of hating who I was.

Yes, being autistic makes some things so much harder for me, but that doesn’t mean I shouldn’t be proud of it. If I could have some ‘cure’? I wouldn’t take it. This is part of who I am, and a different, neurotypical Stephanie would be a different person entirely.

This is who I am. I can’t stand loud noises or bright lights, when I’m overexcited I jump up and down and clap in a very ‘childish’ fashion. People stare at me when I act myself in public, in a bad way. But I am who I am, I can’t – and wouldn’t – change that.

On this Autistic Pride Day, I want to send the following message to non-autistic people:

Accept us, it does us so much good. Don’t try to change us, your ‘therapies’ to try and train us to act more like you are harmful. Let us stim, it’s normal and healthy for us! Build up our self-esteem, don’t tear it down by saying we’re defective or incapable of growing as humans.

We are real, we are actual proper humans with actual proper feelings, and even if we act differently or communicate in a manner unfamiliar to you, don’t just assume we won’t understand what you’re saying about us like we’re not in the room.

I am not the same as I was as a child, autistic people grow and change just like neurotypicals. Just because we might take a little longer to figure stuff out, doesn’t mean we won’t. This world is hostile to us, it makes it harder to figure out. Your world is not as logical as you might think. Some things don’t make sense. What may be instinct to you, we might have to consciously think about. And vice versa.

I am proud of who I am. I am proud of all my parts. I am proud to be autistic.

What Being Autistic Means For Me

This week is World Autism Awareness Week, and though I’ve been exceptionally busy organising demonstrations in support of Clara Ponsatí, working on my dissertation and just generally doing more than I can cope with, I’ve decided to write about what I want people to be aware of about my autism.

I will begin with repeating what autistic people keep saying every year – awareness is not enough to make autistic people’s lives better. We need acceptance. Acceptance of who we are, of how we are different, and of our natural behaviour. We need a shift of priorities away from trying to change our behaviour to finding ways to change society so that we are accepted. It should not be our job to act unnaturally to fit into a neurotypical world.

For me, social interaction in the way deemed appropriate by society is unnatural and difficult, but I can do it. Partly because it’s easier for me to fit in with the norms than to constantly challenge them, partly because I’ve only begun to accept myself recently, and it’s hard to break the habit. And while I can appear perfectly comfortable in many situations, this is often an act.

I am heavily involved in political activism. In the past seven days alone, I have attended the SNP National Council, where I gave a speech on supporting the UCU strikes; organised a demonstration in support of Professor Clara Ponsatí, who is facing extradition to Spain on politically motivated charges; and spoken to a number of journalists about Prof Ponsatí’s situation.

Not only that, but this was my first speech at a party council or conference and my first time taking part in actually organising a demonstration. At the start of the week, I had very bad telephone anxiety. In this week alone, I’ve been on so many calls, from journalists and for job interviews that my fear of phone calls has almost completely gone. This is a very unexpected success but imagine how terrified I was before I made the calls!

While I probably appeared perfectly comfortable in all these situations, I am now completely burnt out and exhausted. There’s still more to do; next week is expected to be just as busy, if not busier. I will probably get through it all; but the minute I get time to rest I’ll probably sleep for over 12 hours trying to get over all this stress.

The part of being autistic I still don’t like at all is the sensory processing disorder. Bright lights can be physically painful, smells like cigarette smoke feel like they are burning my lungs, and I hear all the sounds. I mean all the sounds. I can’t sleep when in a room with anyone else because their breathing is too loud. Thankfully, I have little interest in relationships.

In terms of light, I don’t particularly like sunny days. I am a fan of light cloud cover. The sun can be so incredibly bright, and with all the cars and metal objects in our world, the sunlight is reflected from every which way. In an ideal world, I would wear sunglasses all the time – but I do not have enough self-confidence to do so. Fluorescent lights are also absolutely awful. I wish they would be banned. They give me migraines where my vision goes blurry, which in turn causes a panic attack to go with the meltdown caused by the sensory overload – a double whammy which I cannot control at all. I’ve ended up screaming in public as an adult over this.

Smells can be bad too, particularly cigarette smoke. I hold my breath when passing smokers on the street, and I refuse to host guests at my house that smoke as I can still smell it on them. I was in Dundee a few weeks ago for an event, and when walking to a pub after, one of the people I was with started smoking and I almost ran away. Please, please don’t smoke around me, especially without warning!

The worst sense for me is hearing. I can hear everything. I am wearing noise cancelling headphones as I write. I am in the university library, and I can still hear every time someone takes a sip of water, drops a book they were trying to get from the top shelf, or types frantically on their keyboard. Construction work is the worst for me, the mere sound of a hammer can send me into a bad rage.

This is my father’s fault. He had an extension built over the summer between my first and second years of university and I still half hate him for doing it while I was home. At the moment, both my neighbours and my parents’ neighbours are building extensions and frankly I want to flee the country. I want to live somewhere with no immediate neighbours in the future to minimise the risk of this noise.

In terms of taste and touch, my taste is as sensitive as my hearing, but it is easier to avoid bad tastes than it is bad sounds. For example, I cannot eat spicy food. At all. It makes me scream and drink about four pints of milk straight from the bottle(s) to calm down my taste buds. Do not tell me to just try it. Just don’t. Ever. Touch is actually not that bad for me, although it may play into my desire to never have sex.

Since I’ve had depression, my executive function has been particularly bad. I can counter this somewhat by writing daily schedules. What I need to do changes too often to set up a repeating schedule, so I need to write the next day’s out before bed. I used to be averse to change as well, but like with the phone calls this week, overexposure has helped somewhat. I would not recommend this though, I wouldn’t have done it on purpose. It was very painful at first.

I don’t want people to read this, and be aware of how autism affects me, just to turn around and suggest techniques to ‘fix’ this. The sensory stuff cannot be fixed at my end. Avoiding triggers is the only solution that will work. This would be so much easier if people were willing to make accommodations to lessen the impact. Accept how I am and accommodate it. You cannot cure it.

In terms of social interaction, I would like to see a societal shift away from eye contact and small talk. At the moment, continuing to mask uses up less energy than constantly educating people. Once university, and all the associated stresses, is over I hope to be able to educate more and mask less as it is a better long-term solution. At the moment, that is not possible for me.

So, this is me, an autistic university student with depression, who masks because it’s less stressful than having people stare at me when I act autistic. Who hears all the little sounds people make and often wants to run away and find some silence. Who can’t eat spicy food or sit in a room with fluorescent lights for longer than fifteen minutes or walk past a smoker without wanting to vomit.

Be aware of who I am but acknowledge that is not enough. Accept me, accept other autistic people, accept all neurodivergent people. Know that being autistic will mean different things for every autistic person. Know that we will all present differently, from each other and from other points in our own lives. Don’t just campaign for autism awareness; campaign for autism acceptance too.

The Blame Game

It was January 2007. Several people in my class had been given their first mobile phones for Christmas. My best friend of the time, who I’ll call Jane, had downloaded some ringtone that repeated “Ginger Alert! Ginger Alert!” over and over again. Jane played it when a redhead in our class came near. Mrs P found out and blamed me for being a ‘bad influence’ on Jane and encouraging her to download it.

This was nonsense. I’d never heard the thing before and my parents didn’t even let me take my phone to school. I lost more golden time* than Jane did for this incident.

As a visibly autistic child, I was subjected to many of these incidents, when I was demonised and blamed for things I had nothing to do with because I was different. Sadly, these tales are all too common for neurodivergent people. Society uses us as scapegoats rather than dealing with the real problems, and that has very real and visible effects upon the neurodivergent community.

When the media paints a picture of neurodivergent people as ‘dangerous’, ‘unpredictable’, ‘potential mass murderers’ and advocates for restricting our human rights and locking us up, the natural response is for even the most pacifistic neurodivergent person to be viewed with suspicion by others in their life. Neurodivergent people are blamed for things we did not do as it is a convenient lie – we are expected to be bad, therefore when something bad happens it is our fault.

At some point in that same year, when the weather wasn’t terrible, we had cycling proficiency classes to teach us how to cycle on roads once a week, on a Friday. One ‘Friday’ I arrive at the school and tie my bike to the fence. Jane is late. The other people from my class arrive and tie their bikes up. I notice there is no space for Jane’s. So, I go back to mine and try to make room for hers, in order to be nice. But it’s complicated and it makes me late as well. When I try to explain, Mrs P outright calls me a liar (which hurt even more as I was telling the truth) and I lose golden time.

You know what they say, no good deed goes unpunished.

Unknown date. A boy in the class I’ll call Ross makes a fist and holds it up to my face like he’s about to punch me. I don’t know he’s faking and in panic and self-defence I shove him away from me and run. One of his friends sees. They go and tell the teacher. Mrs P again doesn’t believe that he made the fist and I lose golden time for pushing him.

There were more.

I hated that year, and that teacher. I was made to feel like a horrible, nasty person who couldn’t do anything right. When you tell someone, especially a child, something over and over again they begin to believe it. I began to believe that everything was my fault. I started blaming everything that went wrong on myself. The following year, Jane’s father banned her from being friends with me because I wasn’t religious and I was a ‘bad influence’. I believed the latter, though I found the former quite irrelevant and still do.

I started to compulsively apologise for everything and to everything, including inanimate objects. I felt like everything I touched went wrong. I started to think my existence was harming the world somehow and I deserved all the pain society gave me. I hated everything about myself, and everything that happened was always MY fault.

These days, people are often criticised harshly for apologising too frequently. Articles full of interview tips warn us not to apologise, as it makes us seem weak, uncertain, insincere, etc. Apologies have become associated with negative qualities. They are either seen as an admission of weakness, or as insufficient.

These feelings still persist. When things go wrong I invariably, once I calm down, start blaming myself regardless of who was in the wrong. I will apologise and try to fix things when it is the other person that should be apologising. I let people get away with doing and saying horrible things because it can’t be their fault there’s a problem, it’s always my fault. And if someone does not accept my apology, then it is a sign that I am the worst type of person and should never have been born.

I can no longer (if I ever could, I guess we’ll never know) tell whether something is my fault or not. The subconscious reaction of self-blame overrides everything else and clouds my judgement so much I can’t see my metaphorical finger in front of my face. Which means I am incredibly vulnerable to gaslighting as I will just assume I’m in the wrong. I hate arguments because they mean I need to beat myself up for a week after for being wrong, for starting it because I must be wrong, it’s me, and I am a terrible person.

This is the real effect society’s scapegoating and demonising of neurodivergent people has had on me. The entire idea of ‘different’ being equal to ‘wrong’ that is so prevalent in our society leads people to behave in a hateful manner to others not like them. The effects this has on those on the receiving end can last a long time, even whole lives. You can never tell what effect your actions will have on another person, and you can never tell how long the impression will last.

I don’t know how to move on from this blame game I play with myself, in which no matter what happens I lose. People eventually learn that I’ll blame myself if they leave it more than a few hours, and so nobody ever apologises to me for any wrongs they’ve done. They just wait until I think it’s my fault and apologise to them, and then they win whatever argument was had, regardless of who was right. And sometimes I finally realise this and then resentment builds up – but if I let it out then I just blame myself for losing control.

The truth has been twisted and distorted and thrown out more often than I can count. All these accusations and misinterpretations and unjust punishments in my past have created a future where I cannot see the truth for the self-hatred designed by a teacher who despised me for no reason other than I was different.

 

 

 

*Golden time was the last half-hour of the school day on a Friday where we did ‘fun’ things, but you could lose certain amounts of it for misbehaviour.

Identity First vs Person First Language

It appears the topic of disability language has returned to the forefront of discussion on autistic twitter, as it does every few weeks. As such, I have decided to add my take on the topic. For those unfamiliar with disability discourse, the language used to refer to disabled people is the source of an often very heated debate between proponents of identity first language (IFL) and person first language (PFL).

Identity first language is phrases like “I am autistic”, “she is a disabled person”, i.e. using the disability as an adjective describing the person. Proponents of identity first language are usually disabled activists who argue that their disability is part of their identity, part of what makes them who they are and they are proud of who they are. They do not feel the need to separate themselves from the disability, as without their disability they would be a different person.

Proponents of person first language argue that a person is not their disability, and that in order to put the person before the disability, people should use phrases such as “she is a person with autism”, “he is a student with a disability”. This language is favoured by parents and professionals.

The personal preferences of an individual may vary, some people with autism prefer to be referred to in that manner, but the majority of autistic people generally prefer identity first language. I myself have no personal preference, I use whatever works best within the sentence and context I am speaking or writing in. Given the preferences of the majority of the autistic community, I tend to predominantly use identity first language, however I don’t mind what language others use about me.

My personal preferences aside, it is important to respect every individual’s preferences. When talking about the autistic community in general, it is better to use IFL, as that is the preference of the majority. However, if a certain person prefers PFL, that is what you should use to refer to that person.

The most popular reasoning behind the use of PFL is that emphasis should be placed on the fact that an individual is a person, and not on their disability. However, many of the parents and professionals advocating PFL are also those advocating the use of abusive ‘therapies’ such as Applied Behaviour Analysis (ABA) that treat autistic people as less human than neurotypical people.

Identity first language follows the same pattern as statements like “I am Scottish”, or “I am asexual” – as in the same pattern as other identities. If an autistic person was not autistic, they would be a different person – and IFL reflects this. You cannot separate the autism from the person, the way PFL implies.

Last week, Autism Action Colorado, a group claiming to be founded in 2014, who had no online presence until this year, tweeted in favour of PFL, claiming that “person with autism” should be used in the same way as “person with cancer”. This is incredibly offensive, comparing autism with cancer.

We should always respect people’s personal preferences, including their language preferences. Some people will prefer person first language, others will prefer identity first language. Communities as a whole will have a majority preference. All of these should be respected.

Advocates of both PFL and IFL have one thing in common – they both aim to show that disabled people are people. So whatever side you are currently on, I ask of you to respect the choices of these people, and to show you think of them as people by using the language preferred by each individual.

The Chaos of Social Interaction

The world of human social interaction often seems to me to be the exact opposite of logical. People will say things they don’t mean, mean things they don’t say and act as if apparently implied subtext is of more importance than the words actually said. These actions can lead to a higher probability of misinterpretations and conflict. Yet, these social norms persist. Why?

I have on several occasions considered the possibility that our species enjoys it when things go wrong. The amount of unnecessary arguments, broken friendships and hurt feelings could be greatly reduced, if only people would make their meaning a little clearer. It is the logical thing to do, and considering how usually both sides get hurt in misinterpretations, the best thing to do emotionally as well.

Social interaction norms are baffling and nonsensical. Even a neurotypical person, when asked why people do a certain thing, usually cannot come up with a better answer than ‘because that’s what’s done’. Society seems to lack the capacity for change in this regard. We have a system which doesn’t work, hurts people and makes absolutely no sense. There is a very easy way to change it, at no cost. Yet we don’t.

Humans often seem to ignore our instincts. We cast aside any instinctual feelings we have if they do not suit our purpose at the time. Everything from the need to sleep for long enough, to the fight-or-flight response can be ignored by humans. Given these instincts are there for survival, I rather think evolution has disadvantaged us in that regard. Our instinctual method of communication ought to be truth, yet the common system is based in hiding the truth under platitudes and false emotions.

Autistic people who do not behave in this illogical manner are punished. Behaving instinctually, speaking your mind truthfully, taking people at their word – society tries to stamp these out of people in childhood. You want to behave in a logical manner? No, you must be disordered and defective, here’s some abusive ‘therapy’ to make you act More Civilised, Like Us.

The concept of ‘civilisation’ can be very harmful. Oppressors have used it throughout history to justify their occupations of countries they deemed ‘primitive’ or ‘uncivilised’. But civilisation is one of those words that the definition will always be open to interpretation. And often ‘civilised’ means no more than behaving in a manner those in power deem acceptable. No matter how illogical or immoral.

Saying there is only one ‘right’ way to communicate is always going to be wrong. In a neurodiverse world, there will always be a multitude of different natural communication styles, and this should be respected. At the moment, however, there is only one society has deemed correct: and it is a style that is confusing, illogical, and seems to defy nature. It seems unlikely this system of hidden truths and spoken lies is anyone’s natural style.

Misinterpretations in interactions can have a world of unintended consequences. Lives can be ruined, wars can start… and given the giant number of misinterpretations that must necessarily happen on the whole planet, there will be some positive effects as well. Yet the unpredictability is a result of our chaotic system of communication. The number of misinterpretations per person could be reduced greatly if only we could adopt a more logical system.

The truth should not be something we try to hide. Naturally, we want to avoid hurting other’s feelings, yet often a hidden truth that later comes to light can be infinitely more hurtful than to find out the truth from someone who cares about you. All too often these days, people neglect intentions in favour of results. Yet intentions are important in communication.

For example, if someone had chocolate on their nose, a friend could point it out in effort to prevent further embarrassment. A bully could point it out in order to hurt. Both these interactions use the same fact, and will probably have the same initial result (embarrassment of the person with chocolate on their nose). But these are not equal, due to intentions.

The world of social interaction appears on the surface to follow a strict set of rules. Yet due to potential misinterpretations, and the infinite number of different effects these can cause, the system is entirely chaotic. It’s a bad system; if you don’t believe it, analyse it for yourself. We as a species can do better, and we should. Society needs to realise that it’s social norms are nonsense, and adapt the systems of interaction to make them more inclusive for all.