content: ableism, patronising of disabled people, discussion of the term "differently abled" 

For quite a while I was thinking about the term "differently abled" that sometimes is used instead of disabled. I haven't really used it myself, but heard lots of progressive people praising it and being so happy about "different abilities". From the first sigh it might look like a great term - concentrating on the positive instead of the negative, but taking a closer look into it we can realise how deeply problematic it is. First of all - different from what? Isn't everyone different in some ways and has different abilities? Using the term "differently abled" actually reinforces the idea that there is only one way of being. One "correct/right" way of existing, thinking, communicating, feeling, moving - you name it. Everything else that does not fit into someone's imaginary normality is classed as "different" "abnormal/not normal" (it is used to refer to disabled people in this case). Obviously that way even further contributing to patronising, stigmatizing and dehumanizing of disabled people. It does not matter how much one wishes or believes that the term might suggest that everyone is different and just exists in their own way, it does not. It rather suggests that there is one "acceptable" way of being and the other "different" "not so acceptable" way.

It also has the same patronising tone as the term "special needs", "challenging" etc. and suggest that being called disabled should be something to avoid, something to be ashamed of.. Many times these terms are used as more of a way for those non disabled people (who in most cases lead the discussion about disability) to feel better about themselves and deny (consciously or non consciously) any chance to answer the questions leading to acceptance instead of this tolerance. Disability makes them uncomfortable. It's like saying "at least they (disabled people) are not completely useless, they are good at something too" and continues the association of one's worth to exist with ability to work, be "functional", contribute to the society. World still thinks that my existence is tragic, not worth living and keeps reminding me how many times harder I have to try to be given the right to exist, to take the space, to talk...
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The term "differently abled" does not only understate, but in many cases even ignores the reality and struggles disabled people have to go through their daily lives. It denies the impact of systematic oppression and suggests that disability is one person's problem rather than society's. Why should we let the society ignore the fact that they are disabling us and comfort to their patronising tone? 
Society already does a very good job at ignoring the systematic oppression and ableism. And by refusing to acknowledge that we are disabled by the society's lack of accommodation to our physical and neurological differences from so called typical minds and bodies, we are letting society to know that they do not need to look at the ways they are making us disabled. Disability does not exist on its own. We have to realise that disability is a complex interaction between social, cultural, political & other structures and individual's minds/bodies. It is institutional, systematic and personal ableism that creates disability. And we don't need to deny it exists. 

So yeah, that's why finally I decided that I won't start using the term "differently abled" as this language only helps to reinforce already existing oppression of disabled people.

Yesterday me and my friend L were sitting by the Thames and talking about life, universe, how to make friends (or more likely how differently we actually do that) and everything else. We even talked about my blog (this one and the other one I used to write years ago), apparently L reads my blog (other people do that too, and sometimes they even write to me. It's still difficult to believe, but hey!), so I promised to write another post. This time it's about making/having friends and problems with that. 
This post is for you, L! <3

(My previous posts about problems autistic people face and how you could support your neurodivergent friends you find here and here and here and here (but they are quite old, so my opinions might have changed a little bit) in case you interested.)

Also I wanted to make sure that I do not intend to represent all autistic people and do not talk for anyone else. This post mostly reflects my own personality and experience, but at the same time I feel kind of happy to know that there are other people who feel the same way I do and we can connect to some extent.

So here we go.
Communicating with people is difficult. Forming connections is even more difficult. So it does not come as a surprise that making and having friends is complicated too. It does not matter how many times I told myself that's it, I'm not going to have any friends and will be emotionally de-attached from humans (less feelings, less pain), it never works.
Bellow you'll find some of the things that make having and maintaining relationships difficult for some autistic people. 

The need of confirmation.
I'm desperately looking for any signs that my friends are actually hating me and are just too polite to say that. I know it's irrational and makes no sense, but it does not stop me from living in a constant fear that very soon my friends will leave me. For example if someone promises to write me an email the next day and they don't, I start panicking and thinking that they do not care about me at all, because if they did, they would keep their promises, right? I know people forget things, there are way more important things than me in their lives, personal things happen and so on... Still this is SO triggering and also sometimes makes me to do stupid things I probably regret later. 
I used to ask my friends almost all the time if they were still friends with me, if they were angry at me, if they still liked me and why. I still do that, just trying to keep it to the minimum. Apparently I shouldn't ask those questions as that upset others. I should just see how things go and feel where we stand on our relationship. Well, I'm not able to read people's mind and can't really see how things are going, so I desperately need the confirmation from my friends that they still want to be my friends and nothing has changed...

Feeling worthless.
World keeps telling me that I should know my place. Also I should be more than happy that I managed to meet someone who likes me even a little bit and formed some sort of relationship because that is way more than most autistic people manage to do (according to neurotipicals of course). Basically what they are saying is that I'm so useless that no one ever will be my friend for real. Even if in theory I know that this is not true (it's only those horrible people who want to control everyone giving their opinions), it still hurts. But world keeps telling me this again and again, so I almost believe. All this adds up to the feeling that no one really cares about me and my friends hang out with me out of pity or something like that. I try to prove myself and be useful really hard. It's actually quite dangerous as people might take advantage (and they often do). To partly prevent that I created my own friendship rules, and built other possible protections... But actually I feel that puts nice people off, as I come across as too complicated and arrogant or making friends with me seems too difficult. 

Nothing in between.
I desperately keep looking for this mysterious "in between", as all I do seems to be too much or not enough. I'm extremely emotional and emotionally unstable (just it's not really visible to others most of the time). You know that thing when you are not very expressive and keep everything inside you, so no one actually knows how deep you feel everything. And I mean everything. Lack of knowledge what other people might want and expect pushes me to extremes. I come across or as too attached or as too distant from others (more likely distinct especially in the beginning). Obviously both are seen as not good enough (remember, there is only one way of being and if your actions don't particularly fit - you are a freak). I never know how much attention is just right, I'm not sure how much communication people want to, should I write to them first (and what if they do not want me to)? or should I wait till my friends will write to me? And when I do write first, most likely I've spent a few hours before getting the message just right, not too emotional and not too cold. And those rare times I actually send emotional emails to my friends I regret doing so the very same moment and just wish I could turn time back and press the delete button instead... 
All this confuses others as one day I might be giving lots of attention and the next day (after hours of thinking and reflecting, deciding that no, it probably was too much) keeping the distance and needing space from them. 

Physical contact.
This one is very tricky. I do have lots of sensory issues, so almost any unexpected physical contact causes me an actual physical pain. But I like holding hands with people I really care about (especially if there are lots of other people around) as it lets me to concentrate on one particular action. I also feel scared and lonely in this world most of the time (let's start with not being able to connect to other people the same way they do), so holding hands seems to be one of the safest ways to confirm that at this very moment there is someone who cares a little bit about me and if something will happen I won't be on my own. Or at least that's meaning I gave to this gesture. I search for meanings everywhere, and I'm more than aware that for most people close physical contact have very deep sensual meanings. Unfortunately it makes me very emotional, so I'm struggling to decide if my friends are trusted enough to be emotional with. There is also this fear that if I'll get close to people they will use it against me later. 

Not being able to express myself properly.
This is so hard, especially as I want to say so much to my friends, but when it comes to putting everything into words, I fail. Sometimes (often) people get upset and angry as they think I kept things away from them, but the truth is I just don't think about bringing those topics unless specifically asked. Even when specifically asked I might not really be able to discuss them in full due to the lack of preparation to make a proper script. Many times I do not really know what I want before someone else voices it loudly. It's already complicated to pass (gosh, how much I hate this word actually) in every day situations, but when it comes to deep and long conversations with close people it becomes even more complicated. I also mentally rehearse future conversations with my friends. It's probably not fair on them as part of my every friendship  s based on things and talks that have never happened real life...

Over-thinking.
Analysing everything all the time. Sometimes I create problems in my head that never existed, but it actually helps me to see the point in relationships and how much they mean to me. For some reason over-thinking and analysing things annoys others. It has this attached negativity how analysing everything will make one miserable. It actually partly makes me happy. I go again and again through different moments and conversations in my head trying to connect things and put meanings to different actions (or just thinking about moments I like). Sometimes it's relaxing. Sometimes it helps me go back to reality and see that I idealise my friends way too much. But also I keep reminding all mistakes I did and how I could do much better! I am more than aware of every time I said something wrong, hurt others or was not able to give them support I intended to. And I keep reminding that to myself again and again...

I'm more than aware that sometimes it takes more effort for NTs to form friendships with neurodivergent people, but I tend to blame society for that. Society that gives only neurotypical-neurotipical desired relationship models. All relationships that involves neuroatypical person portrays NTs as some sort of heroes (because who else would want to have a friend considered less human by society's standards?). And that is so wrong! 

So, today is the international Autistic Pride Day. On this day we aim to celebrate autism and finally put more and more focus on the neurodiversity. (just a couple of days ago I was interviewed by Anti-Speciesist Women about neurodiversity and how social justice movements could be a little bit more inclusive, that you can read here). 
We live in the world that wants to acknowledge only one way of being - neurotypical. Everyone else who falls under the neuro-atypical umbrella is seen as not valid. Obviously, our society is very ethical, so we are allowed to exist. Thank you for the permission, very kind of you. Autistic people are also part of the neuro-atypical scale, so yai!, at least we fit somewhere. 
I think it's really important that everyone who is not on the spectrum takes a step back and listens to what actual autistic people have to say. There are autistic people out there (what a surprise, autistic children grow up and become autistic adults) and we have a lot to say, but the world does not want to listen to our thoughts. 
The biggest problem is that neurotypical voices are much louder than neurodivergent. They market their message better. Society not only patronises autistic people (and actually everyone who is not NT), but as well dehumanises us. Autistic people are seen as broken, wrong, less humans... It's difficult as hell to speak up when all your life you were shunned and told that there is something wrong with you. 
They tell you you have no future. They tell you that everyone else knows better what you need, even when they are wrong. They tell you are a mistake. Actually the biggest mistake in this planet. And you learn to believe them. 
But there are more and more autistic advocates who spoke against organisations like autism speaks, harmful therapies like ABA and the search for magical cure. I'm not going to go into more details why those things are harmful and why autism speaks does not speak for autistic community, maybe use google or ask if you really can't find. 
There are more and more autistic people who speak about their experiences, ideas and sometimes we are even heard (thanks to the internet). 
So, what if autistic people do not want to be cured? What if people with brown eyes want to stay brown eyed? What if your message that people suffer from autism is not only a lie, but also causes lots of harm? What if there is not only one way of being or thinking? 
I'm wondering what would happen if one day people would stop pushing their harmful views on others and dictating everyone around how to be. Would the world come to the end?..
Shouldn't everyone just start challenge those structures and ideas? 
Oh, and there is something else I wanted to say. For some reason majority of people tend to believe that autistic people have no imagination. How far from the truth is it! The world in my head is much more real and much more interesting then the one I'm forced to live in. Sometimes it's so awesome that I have troubles staying in this one, and not because I do not respect people around me, but because in my own world the conversation we are having right now has finished a while ago and we did lots of other things in between. And it's not only me who thinks so (about the wild imagination), most of autistic people I heard talking said something very similar. 

P.S. in case you missed, there is a kickstarter campaign running right now to get my next picture book about neurodiversity published, so you can go HERE to support my work and pre-order the book. Yeah, I'm very pushy: https://www.kickstarter.com/projects/aiws/the-girl-who-didnt-know-how-to-be

I said it once, but will say it again. My problem is not me, my problem is the world that can't stand the fact that not everyone is the same and not everyone has to fit into the fucking patterns someone created to control the society. 

HAPPY AUTISTIC PRIDE DAY EVERYONE! 

Copyright © Lex Kartanė

All rights reserved.
All works are copyrighted and not to be used without the permission of the author.

I had such an amazing time in Germany, thanks so much to everyone who came and shared their thoughts with me on Saturday! You people are incredible! I was so scared and terrified that something will go wrong. That people won't understand my artworks and like most of the time I won't be criticised for what I should be, but will experience personal attacks and my ideas will be torn apart. It didn't happen (ok, there were a couple of people who said nasty things, but who does care about them anyway when you have many supportive people around?). It was one of the best days in my life! 

Hello world. 
I just had an exhibition in Germany and still feel over excited about how great everything turned out. So bellow You will be able to find some information (mostly pictures) how it did go. 
And here you can read a proper introduction to the series Mūtātiō

It's so important to talk and connect different issues. Every single piece of Mūtātiō questions gender constructs, looks much deeper into the transition process as well as carefully touches a huge inequality between species. We live in the society where is vital to question our own superiority and realise connections in this huge intersectional, sometimes broken, spider web. World pushes its own morals and ideas, not leaving enough space to reflect our lives, ideas or question one's status quo. But we must stop and think. We must stop, feel and realise that not everything we were told is true. The world is not only black and white. The whole life is a grey area. The obvious might be hidden, but we need to look deeper to realise it. 
You do have a voice. Don't let them silence you...

Special thanks to my parter in crime Theresa for all the wonderful help and support. Talking with you, sharing ideas, planning the future and discussing things made life so much better and easier. Thank you for believing in me and interpreting my works. You are AWESOME (I'm awesome sometimes too). Hope we'll be able to share much more art adventures in the future! 

To all my friends who came all the way from different cities and different countries. Love you all! Thank you for being here and sharing those great moments with me. 
Shout out to all the fantastic human beings I met, it was so much fun to share my ideas with you, can't wait for next time!

As the space was huge I decided to use one of the walls as a conceptual space and do something different. 
I even felt like being at university again, just this time I was the one making all the decisions and there were no teachers you need to please. All the time I was surrounded by most encouraging people who believed in what I'm doing. 
I was not sure how visitors are going to react to this exhibition, as like always, my art is SO controversial, metaphorical and philosophical... Through my art I talk about things that make society uncomfortable. Very uncomfortable. You can't find answers to the questions and after looking and investigating end up having more questions. That's what art should do - make one to think and question.
It worked very well and we ended up discussing about life, universe, inequality and our own experiences. 

Thank YOU everyone who wrote (and drew!) into my book and shared your personal feelings, emotions and thoughts with me. 
My art (and sadness) is everything I have, so sharing it with the rest of the world, getting so much positive feedback and being able to talk with people who can see and feel more than just a beautiful picture made me extremely happy. 
I feel inspired and want to do so much more! I want to be able to leave something with a meaning, something much bigger than I am, much more important.. So people could remember my works and still talk about my ideas after I'm gone. 

I DO NOT WANT GO BACK TO THE REALITY! 

Copyright © Lex Kartanė

All rights reserved.
All works are copyrighted and not to be used without the permission of the author.

Oh well, another year has passed by and here we are... facing another Autism Acceptance Day. 
The day you forced to remember autistic people exist, world telling that you should tolerate them and see beyond their autism, because everyone is so unique! (sarcasm) 
Also it's an opportunity to pat yourself on the shoulder - another good cause, another good work...
Blah blah blah, that's not what actually autistic people need. Fuck your stupid tolerance that indicates there is something wrong with a person. There is nothing to tolerate and nothing not to tolerate. It's not that you have to like every autistic person or every neurotypical person, is it? If there is something you don't like and it bothers you so much, how about you just move on with your own life? Maybe, just maybe, if you do have a problem with someone's needs, likes and dislikes, it's because there is something wrong with you and not with them? 

Autism is nothing to be tolerated, feared or praised, it's just a neurological difference. And most of problems autistic people face on their every day lives were created by society. The same society that believes everyone should act in a certain way and fit into someone's imaginable normality. 
But how would you feel left on your own in a foreign world where everyone looks like you, but is so distinct at the same time? Where everyone speaks the same language, but it's so different from the one you used to? Everything you do is wrong. Everything you say is insane. And every time you try to ask, every time you try to learn their language or find out why it's done one or another way, they ignore you. Why can't you just be like everyone else and create problems out of nowhere?.. Just be yourself. Just not that way you are actually - that different kind of way - the way that makes others comfortable. 
But does it get better? I ask this question myself every day and no, it doesn't. Wish I could say YES it will get better, but that would be a lie. However I believe for some people it does get better and I'm happy for them.

Oh, and autism speaks...
I hate you AUTISM SPEAKS. I do not want to be fixed and your dehumanizing message hurts. 
Please stop searching for the magical cure. There is nothing to cure!
Please stop your unethical and misguided therapies, autistic people are not problem - you are! 
Please stop saying that I shouldn't exist. Stop telling the world how people around me have been tragically touched (whatever that means). They are not (and in case they are I want them to disappear and leave me alone anyway!). 

There is enough awareness (especially negative), it's time to move on. Accept everyone as they are. 
So no, I'm not going to light it up blue. I do not suffer from autism. I still do not belong here, but does anyone care?..

This weekend was incredibly productive and inspiring. Anarchist book fair on Saturday and Anarcha-Feminist conference on Sunday. Lovely people, great workshops, and super awesome safe space policy at Anarcha-Feminist conference - cheers and lots of respect for those who worked on it.

Unfortunately even this policy didn't stop some transphobic people to attend the conference and use insulting language towards other attendees. Really disturbing incident happened during the last workshop about gender. . .

Basically we were discussing things about gender, questioning what it is, how to create safe space policy and how not to exclude others from participating. And when someone said that safe space policies put people away, they afraid to speak up, because there is no safe space for "women who were born women"! Me (and hope everyone else!) could not believe what we were hearing!!! Women who were born women, wtf??? Just a few minutes ago people were talking that if someone feels like she is a woman she is a woman, if someone feels like he is a man, he is man, if someone feels like they have no gender, they are agender, etc. etc. And just after that we have someone complaining for no safe space for cis people!!! what next? A safe space for white sic gender heterosexual men? Sounds logical for me.... 
 
Some of us tried to challenge this person and show why this use language is not acceptable (e.g.: guidelines, number 9: avoid transphobic language or behaviour e.g. excluding trans women from discussions aimed at women), but it didn't seem to work. As the every participant signed the safe space policy and have all the their time to inform themselves about the topics or just ask someone if they had questions, it made no sense just to stay and listen to this nonsense I heard so many times. So we've simply left the room. I was really impressed seeing so many of us standing up and just leaving. (In so many other places I go this support does not exist. You try to speak up and others simply silence you. No one else tries to support you or realises oppressive behaviour towards non-cis people...And it makes you feel helpless, so this kind of support at the conference really empowered and inspired to challenge this behaviour again and again!) 

We are learning all our lives. There are lots of things many of us still don't know. We do mistakes and that's fine, but we like to learn from them. Most of people come to those conferences with an open mind, to learn something new, to share their experiences, but not to use insulting language on the purpose as this clearly was the case... : / That is not acceptable! If people are genuine interested to learn, so many people would be more than happy to educate them. Outside of the conference, as one's incompetence should NEVER oppress others.  

All my 2 hours journey home I couldn't stop thinking about this. Why cis people so many times see non cis people as some kind of danger? Why they feel such an urgent need to attend events having a safe space policies and bring their harmful views to the day light? You, cisgender people, have a safe space 24 hours 7 days a week, all your lives! So bringing  your oppressive behaviour to a safe space is beyond everything! I still feel so shocked by this... 
This conference is one of so few places me and so many other people can openly talk about our gender identities, about challenges and discrimination we face every day. A place we could feel safe to open up without a fear of attacks from others...

If you see oppressive behaviour and language towards non cis people please challenge it, show your support even if it does not touch you. Maybe first time you'll be alone, maybe not. But someone needs to start. Someone needs to stop ignoring discrimination people face on their daily basis. That's the only way to stop it. We can't stay silence and just close our eyes. 
Thank you.