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Spectrum 10k is still not acceptable, here are three reasons why

It is perhaps fitting that Spectrum 10k has reappeared during the dark months of the year. Much like the cryptids of antiquity, it inspires fear in our community, and obscures itself from the sight of all who attempt to quantify it’s nature.

There are no “versions” of the truth. Truth is a singular point, constructed from a collective of subjective experiences. So when the collective experience of the Autistic community tells you that S10k is the wolf among the lambs, we beg you to take heed.

There are three points I want you to consider before handing your DNA over to these malefactors:

1. There is no acceptable version of this study in it’s current form.

Regardless of how they dress it up, no matter how much they polish this particular turd, this is still the starting point of a eugenics program. They want to find the genetic root of autism, and by doing so, open the door to pre-natal testing. If you don’t realise what this means, please Google the amniocentesis test for down-syndrome, and how it has decimated the right of this minority to exist.

2. They are exploiting Autistic people to conduct the newly required “consultations”.

The people conducting these consultations want Autistic people to rehash our concerns for them, concerns that were so important to them that they didn’t take the time to listen the first time. Not only do they want us to repeat ourselves, I very much doubt this traumatic experience will come with any recompense. They also want us to do this without shouting them down. Perhaps, if they don’t want to be shouted down by Autistics, they should stop running projects that could lead to our eradication.

3. They are using token Autistics to manipulate us into engaging.

The fact that they are employing Autistic people to lead consultations is not an accident. It is a direct attempt to tug on our heart strings, and present an air of acceptability to the project. It is my belief that they hope we will believe that they’ve changed, and that it’s different this time, and that we will be more willing to engage with them.

The truth is that they are still using the same misdirection and subterfuge that they always have. Just because the nice man offers you candy, doesn’t mean you should get into the windowless van.

We as a community need to boycott not just this project, but all projects by those involved in the future. If we can show people that their careers are in jeopardy, they will be less likely to make this attempt in the future.

You may feel my words are hyperbolic in nature, but the Autistic community is my chosen family, and when someone threatens my family, I will use my words as weapons. Autistic people have a right to exist, and this flagrant example of ableism and disdain for our existence will become a significant part of our history.

It’s up to you to decide which side of that history you want to be on.

Spectrum 10k is back, and now they want to exploit you

As you may remember from last year, Spectrum 10k was the project that “definitely wouldn’t be used for eugenics” but had involvement from people with links to (you guessed it) eugenics.

I won’t bore you with the details of this project’s history, it has been detailed on this website Here, Here and Here.

No, what I want to bring attention to is the betrayal we are experiencing at the hands of Autistic people, now involved in the project, who wouldn’t know their own tokenism even if they were walked up to it and introduced.

These Autistic people, paid to run consultations, with an aim to progress this experiment in the silent eradication of an entire cultural minority, want us to speak and tell them why we disagree.

As linked above, we have detailed our concerns, myself and others on the BS10k team poured literal tears into defending the Autistic community. We detailed our concerns, we lost weeks of sleep. It took such a toll on us that we are still engaging in peer support over this more than a year on.

So, when we are asked to detail this (yet again) understand that they are asking us to relive that trauma. Trauma that they are at fault for by being involved with this project. Not only do they ask us to go through this for no recompense, they are also asking as to subject ourselves to tone policing.

They believe that not only should we repeat the concerns they didn’t care enough to take note of, we should also do so without getting angry.

If you want to know why there is such suffering amongst the Autistic population, I point you to the likes of S10k and its partners. A group of aggressors who think nothing of exploiting us to meet their own wish to eradicate us.

We will not stand for it.

Our identities are built from our environment. S10k can no longer be allowed to be a part of our environment. We need to make this project untenable. We must not stop until the careers of all involved are brought to an end.

When I tell you to boycott S10k, I also ask you to boycott all future work by the people involved. Because we have to show them just how much we disagree with their actions.

You came for my community, and as a community, we will bite back. We are not the passive agents you hoped for.

We will not let you divide and conquer.

The infinite and I: Exploring my Neuroqueer Self

Of recent, I have been somewhat hyperfocused on how people understand their own identity, and our individual sense of Self. I have discussed in my book The New Normal how the Self is socially constructed from our interactions with others and our wider environment. I think, however, it’s time to really zoom in (or perhaps, out?) on what the Self really is to me.

If being multiply neurodivergent has taught me anything, it’s that the variation of the human mind that exist are as numerous as the people on earth, but what of the Self? How many variations of me are possible?

First it is necessary to consider how my Self came into existence. It was constructed and scaffolded, not just by the people in my immediate environment, but by the conditioning that I have been exposed to in wider society. Society has given me structures based on false binaries, which I have had to deconstruct.

What has become clear to me is that I can become whoever I want to be. The Self is not a fixed point, it is a fluid and moving substance, more akin to a liquid than a solid. The Self that I am now, is not who I was 10 years ago, and is not who I will be 10 years from now. All things change, including me.

In that sense, each human life represents infinite possibility. Each person that exists has unlimited potential. By inflicting normative violence and attempting to mould another to who we believe they should be is to perpetuate trauma. We have to recognise that each time we hold something to be “normal”, we are likely projecting a piece of our own trauma onto another.

Conformity and assimilation has been weilded under names such as “unity” by those in power; but the true unity is in the radical queerness of subverting the social construction of reality. All things in human knowledge are socially constructed to some degree, we have a responsibility to constantly question what we hold to be true. There are infinite variations on the truth because the normative version of truth is in fact a mistruth.

We have been told that who we are, how we think, and how we express ourselves, needs to be in line with a collective truth. This is untrue, we are physical manifestations of infinite possibility. The oppressive structures of colonialism and normative culture rely on us forgetting that. Of course, because how do you control a population that knows it’s own endless possibility?

So, how do I understand my Self?

I am whatever I want to be, I am an ever changing and flowing river of possibility. Like any flowing substance, I calve a path through the landscape. That is why I have to be responsible with the course I take through life. It is not my right to cut through others and their landscape. I must calve through the oppressive structures of my own landscape, while elevating the voices of those for whom the landscape and structures are different.

We are multitude of drops forming an ocean, and we owe it to each other to create the tidal wave that washes the old world away.

Rat Park: Addiction misunderstood

Johann Hari did a lot for the popularisation of the rat park experiment. This person’s now infamous Ted Talk flung open the conversation that perhaps, just maybe, addiction was not biological in origin. While this attempt to depathologise human experience was admirable, both sides of this argument miss a vital cornerstone that bridges so many gaps in our understanding of addiction.

Rat park suggested that the reason the rats preferred drug-laden water was because of the lack of a meaningful social environment. While I will argue that this certainly plays a role on the perpetuation of addictive behaviours, there is more to be considered.

There have been various retorts, but in my opinion, we need to discuss one thing in particular. We need to talk about trauma.

It doesn’t matter what kind of privilege you have in this world, trauma can set off a domino effect, leading you down a path towards addiction. I am yet to meet any addict who was not trying to hide from pain. Some might argue that not all addicts are traumatised, but I would respond by saying that we need to ditch the normative ideas of what trauma is.

Anything can be traumatic, trauma is relative to the Self, not the external observer.

So, yes, a lack of a meaningful social environment can play a big role in addiction, but I do not believe that is what pulls people into the grasp of active drug addiction. It is what keeps them feeling as though they have no way out. That in itself is a traumatic experience which leads to increased drug use.

This is why we need to constantly be aware of the structures and people that comprise our environments. These components are what scaffold us into active addiction. We respond to our environment, yes, but the factor from that environment that plays the largest role is trauma, not sociality.

Queerness and me

Queerness. It’s a word that I hid from for over 30 years, and yet, as I type it, I find myself feeling a deep comfort. I have long known that the space between myself and “typical” society is far greater than the purported six degrees of separation. I have at times considered that gulf to be one of existential orders of magnitude. The concept of “alone in a crowded room” is not alien to me. Nothing much is alien to me, except perhaps (at times) myself.

Being Autistic is a core part of my sense of Self. I understand myself through the lense of Autisticness, I embody my neurology unapologetically. Of course, there is far more to my experience than being Autistic. I am also Schizophrenic. Some might pity me, offering me sympathy for my mental illness. Illness is a word that does not sit right with me.

Schizophrenic, yes. Unwell? If I was unwell, should it not be quantifiable? A value that can be measured by a body that lacks the homeostasis that allows it to function properly.

No, I am neurodivergent. That doesn’t mean I don’t suffer, but I believe we must externalise suffering into the environment. Suffering does not arise in the Self, it is a function of inhabiting a space that was not meant for you.

So where does queerness fit into this?

I have come to understand that there are boundaries between the typical and atypical bodiment of the self. These boundaries are man made structures. Social conventions waiting to be transcended. Much like the way I transcend the convention of neurotypicality, delving into divergent neurology, I find myself openly subverting all expectations placed upon myself.

Queerness, to me, is not about who I love. Who I feel attraction to is such a small part of my queerness. In my universe, queerness is the subversion of a reality that has been imposed upon me. If experiencing psychosis has taught me anything, it’s that reality is not a fixed point. While being Autistic has taught me that society’s truths about what is and isn’t “normal” are closer to the machinations of a propaganda machine than anything objectively true.

No.

I am Queer because I do not belong in normative society. My neurology has made it impossible to assimilate. My queerness manifests from the urgency of an existence that requires me to carve out and defend a space to exist in. The boundary I push is the need be contained. I permit myself to take up space. I permit myself to experience my reality.

In many ways, My queerness or perhaps, my neuroqueerness, has allowed me to bookmark a place in my own story, one in which I can let go of the self-hatred for my bodymind’s tenuous relationship with reality.

It is okay to feel what I feel. It is okay to think what I think. I am no more defined by the intrusive nature of my traumatised thoughts, than I am by the colour of my hair. They are a small part of a wider human structure. It’s okay for me to admit that my sense of Self is constructed from interactions with others. We all build ourselves from the words uttered about us and to us.

Queerness doesn’t feel strange to me. It’s a liberation from the chains of normative violence. It’s freedom to think and feel without the moral judgements imposed by society through me. It is freedom from policing my own existence. It is existential liberation.

Neuroqueer: Dismantling our internalised ableism

This article was co-authored by David Gray-Hammond and Katie Munday

Trigger Warning: This article contains references to systemic and structural oppression, multiple marginalisation, and negative wellbeing and identity.

Ableism is prevalent in the wider world, but something that we often don’t consider is the ableist views we hold about ourselves. It is inevitable that after spending our lives surrounded by normative culture, we become conditioned to view ourselves as broken, deficient, or less than. Despite being able to share compassion with others, we still harbour overtly bigoted views towards ourselves.

We internalise the harmful things said to us by our peers and professionals – sometimes even partners and friends. We take them all in and think less of ourselves and we begin to believe that there is something wrong with us.

It is clear that our interactions with other people play a significant role in the development of our sense of Self. Our identity is constructed by interactions with people in our environment, as noted in the golden equation from Luke Beardon:

Autism + Environment = Outcome

When Autistic people are in an environment that constantly belittles and mistreats us for our Autistic embodiment, the materials that we can access to construct ourselves are often self-deprecating.

How does one dismantle a lifetime of criticism and negative views arising from those experiences? First we have to understand the impact that said criticism has had on our psychological wellbeing. We have to recognise the neutrality of human thought, we have to learn that not all thoughts we have are reflective of who we are. It is possible to have negative thoughts without judging them as an indictment on our character. Once we begin to do this we are able to replace the criticisms with authenticity; a refusal to be ashamed of our embodiment. Perhaps, then, this is where neuroqueering comes into play.

It’s important to note the privilege at play when people are safe to queer their neurology. Authentic embodiment of Autistic experience can cost people their lives and their freedom in the wrong environment. Whether we care to admit it or not, not all Autistics are born equal in this society. Many Autistic people are multiply marginalised, and experience more than “just” disability discrimination.

One might ask whether or not neuroqueering is a physical act, or something that can be achieved in the mind. Many of us are at peace with ourselves whilst not openly confessing our Autistic experience. This reflects more on the environments that we inhabit than how we feel about ourselves. We can be proudly Autistic whilst understanding that not all environments are safe to authentically embody those experiences.

We also have to consider the role that the pathology paradigm plays in the existence of neuroqueering. The pathologisation and medicalisation of Autistic experience is the driving force behind most (if not all) of the ableism that we experience day-to-day. The idea that people who do not fit cultural standards of “normal” are broken, has not only created the mistreatment we experience; it also necessitated the existence of a counter-culture- neuroqueering.

How does neuroqueering change our perception of ourselves?

Neuroqueering can involve leaning into our weirdness, regardless of other’s opinions. It can also be radical self-acceptance and showing love to the parts of our Self that others have mistreated and abused. Not only does this allow us to reclaim the narrative surrounding our existence, it also gives us permission to take up the space that we have been conditioned to believe we are not entitled to.

Neuroqueer theory teaches us that assimilation denies us access to ourselves, and thus, denies access to the communities (or environments) that will help us meet our need for connection. Only by being our authentic selves can we find similar others and share in reciprocal validation. Neuroqueering dismantles internalised ableism, and the oppressive structures that have been built in our minds by others. It is a practice which champions diversity whilst appreciating that many of us still need support.

Neuroqueering politicises the nature of disability, centering us as the individuals in control of our own lives. Control that many of us are denied for being authentically Autistic. It allows us to appreciate the aforementioned neutrality of our existence through the lens of pride, and the refusal to be ashamed. It recognises that reduced wellbeing is the result of systemic oppression, and a chronic lack of access.

Has TikTok become a modern day version of the freak show?

If you are active in disability communities, you have almost inevitably come across disability TikTok. Providing brief insights into the lives of disabled people, it is the fastest growing platform available for the dissemination of information, but is there a darker side to the virality of video’s relating to disability?

From Autism, to ADHD, to Tourettes. We are giving people our emotional label to see the world through our neurodivergent eyes; for no longer than 10 minutes at a time.

For many of us, it is a place to relate to one another and feel less alone, but what of those that watch us as “entertainment”? I myself use TikTok, and have been surprised at the number of people who clearly aren’t there to learn. I stay for those who are, but itakes me uncomfortable.

Our lives are not your entertainment.

We are real, human people, worthy of dignity and respect. Our attempts to show you this should not be fetishized and mocked. If you come to disabled TikTok purely to laugh at us; you are the problem.

I don’t exist purely to make you feel better about you’re own identity. I’m not your inspiration, and I’m not a museum exhibit in a cabinet of curiosities. My life has value, a value that can’t be measured in the monetisation of followers, or the number of people that use my struggles to inflate their sense of superiority.

No.

If you come into disabled spaces sans disability, you need to be willing to sit and listen. My struggles are not an invitation for you to voice how grateful you are that you are not me. My strengths are not a source of income, or fuel for your secret desire that superheroes exist.

I’m not the concept of disability that you have in your head. I’m not a fucking concept at all. I’m a real person with a real life.

If you can’t treat me with dignity, then kindly stay out of our spaces.

Not all who wander are lost: My search for my Self

Over the course of my life, I have been on quite the journey. From infancy to adulthood, many aspects of my life story would both compel and terrify those willing to hear it.

I have always felt that I am searching for something, but never sure of what that something was. It has been as though I was wandering from place to place, never sure of where my destination would be. Even today it seems as though every time I find my “place”, it transpires that this is not my destination.

What I have realised is that the journey I am on does not have a fixed destination. I am on a journey into my Self. I am exploring my own experience of the world, and ultimately searching for my true Self. This is where it gets complicated.

Human beings grow and change over time, I am not the same person that I was ten years ago. In the same way, the journey into my Self has changed me. I am forever in a foreign land, because the land changes as I journey through it. My experience of learning the topography of my inner world, changes my inner world.

In this sense, the Self is not a fixed entity. It is not a quantifiable objective experience. The idea that we alter our inner worlds, by exploring the inner world that exists most likely sounds akin to what the old world would have deemed lunacy. However, it is necessary to acknowledge that we are not a fixed point.

When considering what the Self is, I believe it is necessary to consider it more as a fluid and flowing stream. We form around the environments that we exist in, and by necessity alter our course in order to explore where we have been.

Some might ask if I see myself in my child. I would point out to them that my child has their own Self, still taking shape in the environment. As a part of their environment, I alter the course of their Self, but they will never be the same as me. Any attempt to force them into my inner experiences of the world would do them an injustice.

Indeed, it is necessary to consider that each of us will experience our Self in a unique way to the other.

So, what is the destination on my journey?

In truth, their is no ultimate destination that one can fathom. Much like the wave that breaks on the shore and returns to the ocean, so too will I return to the ocean. The ever-changing Self is a fleeting experience, and that is a gift I must learn to be grateful for.

The journey is the destination. Now it is on us to ensure that our journey leaves the world better than how we found it.

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