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‘Disabled’ is not a dirty word

By Katie Munday (They / them) – Autistic academic, activist and advocate.

There have been too many moments in my life where people have non-disabled-splained to me how to talk about my own embodiment and experiences. People question, or try to correct my language with good intentions; but the basis for their use of person first language (“people with disabilities”) is nothing but uncomfortable, ignorant and down right awful.

People who advocate for person first language believe that Disabled people are separate from, and therefore ‘more than’, their Disabled embodiment. This is problematic as it centers the Disabled person as a person who is suffering, who has an affliction, a disease, a disorder or illness. It takes all the joy from atypical existence and it makes rags of the otherwise beautiful quilt of human diversity.

Us Disabled people are not more than our bodies or neurologies and neither should we be. Neurotypicality and being a so called ‘abled-bodied’ person is not the goal here.

‘Normal’ is not quite as aspirational as many people would have us believe.

Some Disabled folk do use person first language, these people are usually ashamed about and even hate their bodyminds. Some of us struggle with these things on and off throughout our lives and acquired disability is a process which tends to come with a lot of sadness, regret and blame too. However, many more of us are happy and proud to be who we are. Our disability and /or neurodivergence is a massive part of who we are – it is inseparable from our very essence, the very things which make us, us. I couldn’t do anything in a non ADHD / Autistic / OCD fashion because all of these differences effect all of my life. They’re not compartment-able or controllable.

Non-disabled people love policing how we talk about our own experiences, cultures and bodyminds. Even when they do start an open-conversation with us they still disagree. They have this need to control our narrative: ones they don’t understand, usually have no stake in and seemingly don’t care about.

My opinions and understanding of myself, my life and my experiences are not up for debate.

I am Neurodivergent.
I am Autistic.
I am Disabled.

All of these differences and identities are the ways in which I make sense of the World around me and my part in it (including the way I am treated by others systemically and individually). And none of these are shameful terms.

‘Disabled’ is not a dirty word.

Not your tragedy, not your epidemic, not your inspiration: reflecting on Autistic existence

Being Autistic is not inherently good or bad, it just is.

That’s not to say that I am not proud of who I am, and I am most certainly not denying the obstacles I have had to over come. While being Autistic is an inseparable part of my identity and existence, it is also an aggressively neutral thing.

I am good at some things, usually obscure and complex things, and awful at others, usually the things that society takes for granted.

Like any human being, my existence is predicated on breathing the same air that every other human breathes. I love, laugh, hate, and cry. I cheer for my friends, and at times can be really quite unkind about people I do not like.

I am human, not some childlike picture of innocence and naivety.

This, then, is what makes me so angry when society at large uses me to sell their own narratives.

When the “autism parents” want sympathy, I am a tragedy. When the antivaxxers want to cherry pick data, I am an epidemic. When the world sees me do an aggressively average thing, I am an inspiration.

I am all these things because (to quote the wonderful Dr. Chloe Farahar) “There is no autism, there are only Autistic people”.

I am an abstract concept, and at times I am the personification of existential ennui, is it any surprise when I exist in a society that uses me to sell a story? Society at large certainly doesn’t care about my story, or the story of my neurokin.

Autistic people do not exist for your benefit. We do not exist to serve a purpose outside of our “understanding”. We exist like any other human. We intersect with many other demographics of humans. Our lives are complex and nuanced. It doesn’t matter whether we are Nobel laureates, are unable to engage with traditional employment. Whether we care for ourselves, or need lifelong care.

The inner worlds of all Autistics are rich, complex, and beautiful.

I am Autistic, and I refuse to tell your story for you, when you won’t even listen to the story that myself and my community have been shouting from the mountaintop.

I am an Autistic person, not a scientific phenomenon

Recently I have been reading Authoring Autism by Remi Yergeau. It has really been opening my eyes to the use of rhetoric in the construction of narratives surrounding Autistic people, and has very much inspired me to write this.

I am an Autistic person.

And yet the world treats me as a phenomenon, a peculiarity that needs to be studied.

Some of the world fears me, others adore me. Some care not for whether I live or die, while others fight for my existence. Most of them have one thing in common; they don’t trust me to speak for myself.

Autistic people are treated as clinical subjects. Repetitive and self-stimulatory behaviour. Clinical definitions for a deeply disordered non-human entity.

But I am human.

I am a person.

What they pathologise, is what makes my existence into a thing of poetry.

My repetitive hands trace the words that my mind can not find. My fingers type the stories that my mouth doesn’t speak.

What they call self-stimulatory, I call world altering. Where they reach for liquor to calm their mind, I find calm in the flapping of my hands, each beat like that of a birds wings.

Their description of sensory processing issues are actually a connection between my body and environment that I can not put into words. While their world is painful to me, I guarantee that they haven’t heard the electricity in the light bulbs sing.

They assume incompetence from all except themselves.

I am not a mindless automaton. I breathe the same air as you. I feel love and hate, pain and pleasure, I ponder my place in the universe. I see and hear how you talk about me.

I am an Autistic person not a scientific phenomenon. Let me write my own stories.

Neuroqueering the Neuroculture: Exploring our place in society through the neuroqueer lense

Recently I started talking about a concept I call neuroculture, by discussing the risk of harm to society if the prevailing neuroculture becomes homogenous (find that discussion here). In this discussion, I would like to explore our individual contributions to said neuroculture, and how we can effect change in a neurotypical dominated culture.

It’s no secret that neurodivergent people are actively oppressed by society. We live in a neuroculture that assumes anything outside of neuronormative standards is broken or sick. Neurotypicality has become the dominant culture, and with it, the pathology paradigm.

Despite this, largely on the Internet, smaller and more contained neurocultures are developing. These cultures are still largely homogenous, consisting mainly of a particular neurocognitive style. However, the advancement of the neurodiversity movement and an increased understanding of what is and isn’t neurodivergence is allowing people of many different ‘flavours’ of neurodivergence to come together. Thanks to this, there are now neurocultures developing that allow for the inclusion of multiple neurocognitive styles.

So now, we have two distinct neurocultures, the dominant neurotypical culture, and a neurodivergent sub-culture.

Here is where neuroqueering comes into the mix.

In order for society to survive, we need a fully inclusive neuroculture, that allows neurotypical and neurodivergent people to co-exist without any one group retaining more privilege than another. Effectively, a neurocosmopolitan society. In order for this to happen, the prevailing neuroculture needs to subvert and erase the neuronormative standards that hold us back in the pathology model.

Neuroqueer theory tells us that the best way to destroy neuronormativity is to intentionally queer our neurological processes. To put it another way, the mask must be fully destroyed, and we must act in a natural and authentic way, not the way that society expects us to act.

This will be difficult for everyone in the current neuroculture, but especially difficult for neurotypicals. Neuronormative standards come easily to them, and subversion of those standards has been stigmatised for a long time. Therefore, the neurodivergent led neuroculture needs to model the queering of societies expectations and roles. It is on us to teach the dominant culture that there is another way to exist.

By engaging in the act of neuroqueering, we ‘normalise’ the subversion of neuronormativity, and the more of us who do so, the more ‘abnormal’ society as a whole will become. Isn’t that a wonderful thought?

Of course it’s not a quick or simple process. Many of us are not privileged with the safety to just drop the mask completely. That’s why advocates and activists must work everyday, and change the neuroculture one small step at a time; until each drop becomes an ocean of change.

Society needs a cosmopolitan neuroculture to thrive.

Neuroculture and the dangers of homogeneity

Today I decided to learn about monocultures. A monoculture is an environment in which a single crop is cultivated. The problem with monocultures is that a small change can destabilise the entire thing.

This got me thinking about something I call neurocultures. A neuroculture can be considered the culture created by a collection of neurocognitive identities in a shared environment. Current neurocultures tend to lean towards neuronormative standards, and this is what I want to discuss.

Neurodiversity is not just a biological fact, it is a necessity. From an evolutionary perspective, the presence of multiple neurocognitive styles in a given culture increases the likelihood of problem solving and the survival of the species. Unfortunately, over the years, we find ourselves in a neurotypical dominated culture, with other neurocognitive identities being actively oppressed.

Imagine a plane. You can take a screw out, and it will still fly, you can probably take several screws out. However, eventually you will have taken too many screws out, and the plane will crash. This is what is happening to society.

The current neuroculture is becoming homogenous, with attempts at eugenics being normalised thanks to the presence of systemic ableism. Screws are being removed from the plane, and we are heading for catastrophe.

This is why rights movements like the neurodiversity movement are vital. We need to perpetuate the neurodiversity paradigm. We need to stop the medicalisation and pathology model of neurodiversity. Such models justify the extinguishing of neurocognitive styles that do not conform to the homogeneity of the current society that we live in.

Much like a monoculture, we can’t predict the small changes that can cause disaster in a homogenous neuroculture. We need diversity to survive. It doesn’t matter whether you are autistic or neurotypical, if your culture only includes your neurocognitive style, you are at risk of collapse.

This is why it is vital for all neurominorities to share their culture with each other. We must create a neuroculture as diverse as nature intended. Humans evolved to be symbiotic with each other.

Functioning labels, subgroups, neuronormativity, and capitalism

Functioning labels have long been hated in the Autistic community. Not only are they wildly inaccurate, but they do not take the dynamic nature of our disability into account. Despite this, many professionals and laypeople continue to use them, or variations on them.

Arguments about the inaccuracy of functioning labels and the assumptions they create are important, but extremely reductive. There is a darker side to the purpose that they serve, and this needs to be discussed.

We live in a world that operates on what can be considered a neuronormative premise. This arises from the privilege awarded to neurotypical neurocognition, and the acceptance of the idea that neurotypicality is the one correct way to exist.

The question is, why is this considered the “correct” way to exist?

Society has been designed to fit the majority, with minority neurocognitive identities being marginalised and oppressed. This oppression has lead to the disability of neurocognitive styles that do not fit into neuronormative standards. We are not awarded the same access to our environment as neurotypical minds.

This lack of access has lead to Autistic people having a lower economic value, and a greater perceived cost to society. When you deny people access to work, they can’t produce profit or pay taxes, but you still have to keep those pesky human rights.

Thus we have the origins of functioning labels.

Whether people care to admit it or not, they measure the economic value of the Autistic person. People deemed “high functioning” are expected to produce more profit, and are denied access to supports that would support their wellbeing, while those deemed “low functioning” are expected to produce little or no profit, while costing the system money.

This in turn is used to dehumanise Autistic people, with the end result being violent ableism and eugenics.

This is also the function that subgroups would play in the landscape of “autism diagnosis”. When certain researchers call for Autistic to be broken down into “types”, what they are actually looking for is a way to invalidate the Autistics standing against their ableism; it then also opens the door to justify the eradication of certain subgroups of Autistic people deemed financial burdens on the system.

It is essentially a divide and conquer tactic, and most certainly another tool of oppression. It allows non-autstic researchers and policy makers to remove undesirable neurocognitive styles from from the gene pool.

When you use functioning labels, this is what you are upholding. This is the harm that you are contributing to. However it is difficult to spot because the harm is buried under centuries of neuronormative thinking and misinformation.

In order for Autistic people to be treated equally, and for eugenics to fail, we must stand against the use of functioning labels and subgroups imposed upon Autistic people by those with no knowledge of the Autistic experience. When we know better, we can do better. #NothingAboutUsWithoutUs

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