The Trauma of Ableism

Content: This post includes traumatic experiences of ableism, though not depicted in a very literal sense.

 

I’m in a pharmacy to get my meds. It’s crowded and warm, but I’ve taken my baby’s outdoor clothes off and placed them on my hip. My baby is still close to crying, despite having been fed, changed and had a nap recently. I’m frustrated and feel stressed out because of it. Why can’t you be okay? I wonder. But the thing is, I know why you aren’t okay. It’s too noisy, too smelly, too many people moving around. It’s too much of everything.

I know it, but it can’t be true. It’s the same experience that I’ve had all of my life. The sense that it’s too much of everything, it’s obvious but at the same time not true. I’m close to panicking because I’ve realized that you are like me in the sense that according to other people isn’t supposed to exist. This is not how you are supposed to be a human being. This is not possible.

Still, it’s so terribly authentic. I feel your reactions. I can read you. I understand you way too well.

Time passes. I learn that you are autistic. I’m forced to be confronted with myself and this time, I can’t hide anymore. This time I start to deal with everything that I’ve been resisting for all of my life. I process information differently than people are expected to do and it affects everything that is me.

I am slowly learning about myself because I have to, but at the same time I have to put myself on hold. It’s a terribly contradictory process but it’s the only way I see possible for several years. I have to put myself on hold in the middle of an identity crisis, because I have to fight for my kid’s right to health, accessibility and a good life. I fight and I learn. I learn what accessibility means for autistic people and I learn what autistic actually means. Actually Autistic, the twitter hashtag that leads med to sources of information that turn my world around.

I read what autistic people have written and as I acquire a new vocabulary, some of my chaotic sense of myself is starting to make sense. My focus is always my kid but in the background, I’m getting hints of myself.

I build a new life for my kid. I use everything that autistic people have taught me and demand changes in a lot of areas. I learn how to communicate in more accessible ways and how to organize our life in a new way, more suitable to my child’s needs. It works. It isn’t easy but it happens. My kid feels better and gets a better life. My kid starts experience joy and well-being again. Then I realize that the struggle will never be over, because ableism is everywhere and accessibility is something that only comes through struggle. It should be included under the term “human rights” but in most cases, it isn’t.

Then I collapse. My identity crisis can’t wait anymore. I don’t have any energy left to be angry and now, the words that have been ingrained are starting to really hurt. Slowly, I’ve taken the first steps to learn how to be me and to take good care of my child but it becomes clear that the world isn’t only inaccessible because a lack of knowledge. I find out that you actually detest us. You see us as not really human, as something wrong and inferior. Now, the second struggle starts.

This is a story without an ending, because I don’t even know how to write the second chapter. I thought it was time to heal and move on but now, when I don’t have the energy to be angry and educate people anymore, I see your hatred. How will I ever be able to get passed the trauma of growing up autistic when so many people are reproducing this trauma, both to me and my kid?

You are, once again, telling me that my way of being a human being is wrong. That people like me and my child shouldn’t exist. You are telling me that people like me and my kid should accept, tolerate and not fight against the violence we’re subjected to. You are telling me that people like me and my child aren’t really completely human.

Ableism is real. Ableism can be traumatic and extremely hurtful. Ableism causes damage.

I still don’t know how to live in a world that hates me and my kid so badly.

I Was Autistic Even Though Nobody Knew About It

Content: This post includes ableist statements and mentions a wish to die.

 

 

Damn those kids whose parents can’t raise them properly! All those kids who can’t sit on a chair and listen like normal people.

I remember
standing up, leaving the room and running for my life
running for protection from the social rules I didn’t understand
the voices that I couldn’t process
the language that wasn’t mine

You need to stop doing this! Stop leaving the room every time you don’t get things your way!

I remember
the sounds turning into a traffic jam
waiting for processing, but I’m too slow
the load of unprocessed sounds is turning into noises pushing me to the ground
to the meltdown

Why haven’t you done your chores? You have arms and legs that work totally fine!

I remember
staring at the door, trying to open it and get the vacuum cleaner
and I just can’t
because of the noises, smells, movements, words and people from earlier today
everything repeating itself, over and over, and I still don’t understand it

Why aren’t you in school? You’re only allowed to stay home if you’re ill!

I remember
wishing my life was over
being so full of noises, pictures, words, feelings, confusion
desperate from being forced into a world I didn’t understand
rather dying than failing to be a real person one more time

 

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We don’t need more awareness of that autism exists, we need real knowledge about what life is like for autistic people. We need to be accepted for who we are, not forced to try to appear as allistic as possible. We need the world to listen to autistic people, and to learn about autism beyond stereotypes.

You were everything that I didn’t dare wanting

So Liz,

Here we go again
the memories are back. The memories of… it. The sense
the sense of not grasping, not understanding, but desperately wanting
the memories of falling

“Come on now try and understand
the way I feel under your command”

You probably didn’t know how much I was under your spell
you were the music
I should have been the lyrics
but my words were lost, evaporated, or maybe I never had them

You were everything that I didn’t dare wanting
I wanted you anyway
if the night belong to lovers, why did we never get one whole night together?
why didn’t I take it?

We had desire and hunger, but there was no disguise
I knew that my lust was love
but loving you meant facing my autistic self
the self without words

Quoting a song is silly
but my memories of you are music, rhythm, heartbeats, breathing
I had no words for what was happening then
I still don’t

“Take my hand as the sun descends
They can’t touch you now”

I had already taken the step out in the middle of nowhere
I was already falling
if we had held hands and fallen together
maybe we could also had landed together

I never found my words, but my demons got me
when the disease hit me
I thought it was a punishment for what I had wanted and almost asked for
for you, for authenticity, for being autistic

For a life without disguise

Love with an Autistic Dimension

My mind is occupied with love. Love and autism.

I’ve experienced romantic love a couple of times, and I’ve had plenty of experiences of sexual desire. I’ve had romantic crushes that have faded, flings that turned into friendships, friendships that evolved into romantic relationships and so many other kinds of relationships where the experience of love has changed over time. At the moment, I love a couple of people, all in unique ways. My thoughts are often occupied with how difficult I find it to trust people and let them in, but when I think about it like this I can see how much warm feeling for other people I have at the moment and have had in the past and that makes me happy. Love isn’t one single, monolithic feeling or experience. Rather, love is multiplicity.

One of the people that I’ve been (or maybe still am) deeply, romantically in love with stands out in ways that I don’t know how to describe. I just wrote that all my experiences of romantic love have been unique to me and they have, but this one is different because not only did my love for her feel different than for all other people. My feelings for her had (have?) a whole separate dimension. Honestly, it’s not a perfect way to describe it, but I’m lacking words and that’s not only because I’m writing in a language that doesn’t feel fluent to me. What I felt (feel) for her was something so…special, rare, different, unique… no words are really fit here… that I don’t have any words in any language. Despite that, I have a strong urge to write about it. It doesn’t make sense. Or maybe that’s exactly what it does.

When I think about my time with her, Liz, I feel like I’m totally falling. It was like I was standing at a mountain and when I was with her, a separate world opened and we fell straight into it. Considering that the expression “falling in love is” exists in several languages, I suspect that I’m not the only one who have experienced the falling feeling. Tomber à l’amour, falling in love. However, what was special with my feelings for Liz wasn’t the falling feeling, but that new dimension of intimacy.

It was like we fell straight into a world where our words and actions had a meaning that only we understood. Like the words I had been saying, writing, hearing and reading all of my life had only been making some kind of sense, because my undiscovered autistic self had always lived with such a chaos and confusion. When other people talked about how they, and as they assumed even I, experienced the world, it only fit to some degree. I had been trying to be that person that other people told me that I was, a real person that experienced sensations like real people should, and felt feelings like real people should. It had never fit, and all my words had always been scraping and rubbing my mind instead of fitting smoothly. And then I fell deeply in love with Liz and we talked about experiencing other people’s feelings, about not being able to shield ourselves and about wanting so desperately to be close to other people while easily being overwhelmed and needing space and quiet time.

I was shaken to the ground. I was so used to hiding everything that was me, so used to be an unrelatable freak that had to exhaust myself in my efforts to be like (what I thought was) a real person. With her, I lost everything that I had to defend myself. I showed myself to her and it scared me to the bone.

This happened several years ago, before I had understood that I am autistic. Up until recently, I never understood why I was so shaken by this experience. Now I think I finally know why.

Keeping Up Appearances

I read a post about the problems with calling autistic people “high functioning” and it made me think of how much my life always has been about struggling to keep up appearances. I grew up without any names or diagnoses for any of my disabilities, and not knowing I was autistic was by far what made me suffer the most. I worked so hard on seeming “normal”, because when I failed (which I did, a lot), nobody understood that I needed help, support and accessibility. Instead I was considered weird and punished in different ways. One of the reasons for why I think functioning labels as so harmful is because it becomes a measurement tool to state how “normal”, meaning similar to neurotypical, an individual seems to be. It obfuscates how much work a person might have to do to keep this up and as a result, a lot of autistic people suffer in severe stress collapses. (There are more reasons for why I think functioning labels are harmful, for instance I see it being used as an excuse to treat people terribly bad, just because they are considered “low functioning”.)

So what do I mean when I write that I worked hard to seem normal?

• I did careful research in books, movies, tv shows, among kids in school etc. about how people moved and talked.
• I observed people around me and analysed what kind of behavior that led to different outcomes. I didn’t understand it, but I memorized it and spent plenty of time analyzing it.
• I took all this research and wrote lists on what to say, what to not say, what to do, how to walk, how to dress, how to be in order to seem like a real, relatable person.

Writing this makes me cry, because I can’t believe how hard I had to fight every day as a kid, and still – I failed. I was punished in different ways for everything I couldn’t be.

I was eight years old the first time I started to refuse going to school, because it was too much. I was stressed out. I wonder if people understand what kind of life this was. I worked myself to exhaustion and still I failed, not only in certain areas of life – I failed at being a real person. The lists I made weren’t like a helpful shopping list to remember what to buy, it was an attempt to construct myself as a human being worthy of respect and being liked.

As a kid, I hid most of my interests, because they were considered weird. I had to hide almost everything that was me and my life was a constant battle to just navigate and understand people’s behavior. It felt like I was running a car really fast in the middle of total darkness with no lamps – I had no idea what to expect of anything. I had no idea when I was going to crash into something, I just knew that I would and still couldn’t stop. Because the only way of stopping and protecting myself from collapsing was to stay at home and hide in my room. I did that in periods of time, until my parents dragged me to school, threatening me with that if I didn’t go to school, the police would come and place me in foster care.

I was verbal, but talked to mask everything I didn’t understand. I had so many scripts that worked fairly well, but it got me in trouble too. When I actually did tell the truth, without scripts, people didn’t believe me. My reality simply couldn’t be true. According to people around me, there was no way you could stop going too school as a teenager because you don’t have any mental energy left.

I thought about all the energy consuming research to fit in when I watched parts of the first episode of the horribly bad Atypical on Netflix. We get to see the autistic main character Sam do exactly this type of research, but the show fails to portray how exhausting it is. I think that’s really bad, because this kind of emotional and mental labor seems to be a fairly common, and a very exhausting, part of autistic people’s lives.