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.

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Shameful vulnerability and the longing for autistic access intimacy

Content: This post includes mentioning of an activity that occurs in a sexual context

 

A while ago I got to try a new medication and even though I’m still very ill, it has a good effect on one of my most problematic symptoms. Now, when my heart doesn’t go bananas and pushes me into a horrible PEM (Post-Exertional Malaise, core symptom of Myalgic Encephalomyelitis) crash that I never recover from every time I feel a little arousal, I can have sex sometimes. Not often, not without it affecting my health, but sometimes.

One of the things that I’ve discovered is that I really like it when my partner strokes my back. My spine used to be very sore but nowadays it isn’t, and that means that the experience of having my back stroked changed radically. It turns me on, but I also like it in contexts that aren’t sexual. This isn’t complicated regarding my diseases, pain and disabilities, it’s not complicated for my partner either so in theory, this is great.

Practically? This was (is) a huge deal for me to admit, both to myself and my partner. This is shameful and just writing it makes me blush and the butterflies in my stomach go wild. Why?

For a couple of months I didn’t at all get why and honestly, I couldn’t really handle thinking about it either. However, it bothered me so much to feel so ashamed and not understanding why that it kept coming back to me. How can it feel so difficult to like having my back stroked? It’s hardly considered taboo or particularly kinky to me. As a matter of fact, I feel way less bothered by a lot of other stuff that I guess I do consider kinky.

Then it dawned on me: It’s about vulnerability. It’s the same thing coming back again and again. Admitting this is a sort of exposure that means acknowledging a part of me that I’m still struggling to deal with and don’t have words for yet. It’s the scared, traumatized part of me that fears being judged for who I am, for my perception and sensory issues. This isn’t just about what feels good, this is about who I am. About having everything that is me rejected, dehumanized and considered not valid. This is about being autistic and connecting with my autistic self, and that is a very taxing thing for me. It’s also something I’m longing for.

My partner is not a judgemental person when it comes to sex, and my fear isn’t that he will judge me for this. This fear is so much deeper, because it’s about taking the risk of not having my sensory experiences understood. My partner can very often understand me on an intellectual level, but I long so hard for the kind of validation I only get when somebody shares my sensory experiences. I guess I’m longing for autistic access intimacy, and – I’m hurting from the lack of it.

Autism Support and Despair

So, there’s something I need to discuss. Something I need to tell the world, because seriously, the people who should know better obviously don’t understand this.

Being an autistic parent to an autistic kid is hard. It’s not the autism that’s hard, it’s the allistic, and abled in general, world. The more I analyze and understand myself and the further I proceed in the process of unboxing myself as an autistic person, the more I realize that the clashes with the abled world are so horrible to me that I need help. Theoretically, I need some kind of support person helping me navigate, translate and cope. Theoretically.

In reality, the abled world don’t get what autism is. No, not even the people who are praised for their so-called amazing skills. They lack a power analysis, they lack a critical perspective and they lack the ability to analyze themselves as allistic people. All this means that so many of the allistic so-called autism experts can’t help me, because they constantly repeat and reproduce the things that are causing me trouble.

Because I’m parenting an autistic child I’m a member of some parenting groups and are exposed to the so-called allistic autism experts on social media and there are few things in the world that can make me more devastated than seeing how these people are worshipped like heros for their very mediocre understanding of autism. Keep in mind that these are the comparatively knowledgable people, the ones that sometimes listen to autistic people and aren’t doing ABA.

The other day, I read a bit from a book that’s supposed to be some sort of guide to autistic parents. The book says that being autistic means that it’s hard to understand, read and interact with other people. However, this chapter didn’t mention at all that most allistic people are spectacularly bad at reading, understanding and interacting with autistic people. This may seem like a minor detail but it’s not. In fact, it’s this kind of lack of critical perspective of oneself from the allistic world that makes me feel so much despair and think that the chance of ever finding somebody that could offer me professional support and that wouldn’t consider me unrelatable is zero. Because professional support is organized from a very allistic point of view where I live.

I need support in a lot of everyday situations but the existing autism support pushes me into so much despair. I’m trying to reconcile with the fact that I will never have this support, but seriously, it’s difficult. When I was a kid I thought that as an adult, the world wouldn’t be a totally unreliable, scary, confusing and dangerous place anymore. But it is.

Without Words

I’m ill. Due to my diseases, I see my kid, my partner, my assistant and my doctor face to face, but that’s it. I interact with my friends online, because seeing people and having a face to face verbal conversations is too demanding. A lot of people seem to think that this is terribly tragic, but I don’t think it is. A conversation online is still valuble even though it’s online. Kind words from friends are just as valid online as face to face.

However, there are a number of things I don’t have words for and it’s getting more and more complicated by each day. I’m pulling away from my friends because I’m consumed by some stuff that I can’t talk about, because I have no words for it. Since all of my friendships are so much based on words, I don’t know how to interact when I don’t have any words for issues that are so major to me that I’m caught up in them.

Ever since I started this blog I’ve been mourning and I thought that by now I would be done, but honestly, I’ve just started. There are so many things that need to be untangled and unboxed. So many things that I experience but that I can’t parse or understand. So many things that I never talk to anyone about, because I don’t now how.

I experienced not being safe as a kid and it’s haunting me, but the experiences are so frightening and clash so hard with what I’ve been taught about the world that I can’t comprehend them. I relate very differently to other people, my feelings and thoughts have patterns and there are definitely logics that probably could be understood involved, but it’s all so very different from what I’ve been told human experiences are supposed to look like.

I’m autistic, but I’m a closeted autistic who rarely gets any validation of myself as an autistic person. I have to deal with my pain alone because I have no words for it but at the same time I’m constantly reminded of it because I’m parenting an autistic kid. I’m confronted with the allistic world over and over and most of the times, it’s like reliving a childhood trauma.

 

Precocious

The other day my kid talked about an idea they had, that they thought was clever. I agreed, it was this kind of idea that was unconventional but solved a problem really well, so yes, very clever. The word my kid used for clever was a term that in our first language sounded… yeah, what? How should I describe it?

It was the kind of word that I used a lot as a kid too. The kind of word that made adults call me “precocious”. And at this moment, I realized that the burden of being called precocious is something that my kid will carry, just like I did. I want to protect my kid from this but I really have no idea how.

Why is it a problem to be called precocious? To me, it was humiliating because it pointed out that I was different and didn’t fit in. I didn’t personally care that much about fitting in, but adults made it very clear that you have to make an effort to fit in, because otherwise your life is ruined. This word also pointed out that adults saw me as inappropriate and that my intuitive communication might in a way be advanced but socially so very wrong.

The other day I found myself using this word, but in my first language, and it made me so sad. I don’t know if “precocious” carries the same connotations in english as in my first language, but in my first language, it’s an allistic interpretation of autistic communication. I feel ashamed. I will never, ever use this word about my kid or any other person again, because I don’t want anybody to grow up feeling so ashamed of themselves as I did.