Tag Archives: outcasts

My Aspergers Journey

I’m at a sort of turning point in my life for the time being; where I finally really take ownership of asperger’s syndrome*. Like say “I have Asperger’s Syndrome” to my family, for example (so far the only example).

It may be a surprise that it is even a turning point. It is several years ago since I discovered aspergers syndrome and I have spent probably thousands of hours researching, watching videos and interacting online in relation to aspects of it, immersed in a sense-making process akin to what Cynthia outlines in her series “I Think I Might Be Autistic“*:

 

THE SENSEMAKING PROCESS

  1. Shift in identity – identification as aspie/autistic
  2. Retrospection – looking back at key life events in the context of this new identity
  3. Building narrative accounts – retelling the story of your life in light of AS/autism
  4. Sharing your narratives – strengthening and preserving your stories by sharing them with others
  5. Reflecting – the ongoing process of receiving feedback on your stories and reshaping them as your understanding of your narrative changes

From Developing a Sensemaking Narrative by Musings of an Aspie AKA Cynthia.

 
Cynthia’s list resonates well with me, but not in that order. In my case, step 1 is the last and hardest step. That is because “identification as aspie/autistic” is not just about what I am, it also represents a collective identity. The disadvantage of my extensive research of first hand accounts like blogs and forums is that I’m acutely aware that a lot of different people already own Aspergers/autism… define it and represent it. Continue reading

To Pass or Not to Pass…

This post is inspired by The Myth of Passing by Cynthia Kim, and The Lie of Social Skills Training by Jodie Van.

Because passing is a myth. So often what we’re doing when we’re passing is simply keeping a lid on our natural tendencies. And sometimes we’re not even doing it very well.

The Myth of Passing by Cynthia Kim of Musings of an Aspie

 

Cartoon blue pony with rainbow mane and tail walks a tightrope between cliffs
Image: “Tightrope Walk” by Orfearus

 
What does it mean to pass?

“Passing for normal” if you have a disability, means to mask your disability enough so that so called normal people don’t notice it. For example, if you are deaf but so skilled at lip-reading + hard working at getting by that people forget or don’t realise you are deaf, you’re passing.

They may instead think you are weird though, if they presume that you can hear what they can hear, and think you “ignore” information selectively or even worse, that you are playing social games with them.

Worst of all, if you tried to compete on equal terms in a hearing world as deaf you’d work hundred times harder than everyone else and still not or barely do as well as them on their terms. You’d be in a constant battle to try to piece together information from disorganised bits and hang on to the shared hearing-reality with your fingernails while your errors accumulated. And if you were to work that hard everyday to just try to meet basic expectations, you’d probably soon burn out.

With deafness, the problem is obvious and no one really expects a deaf person to compete with the hearing in a hearing world. No one expects a blind person to pretend to be able to see either.

With Aspergers/high functioning autism which is what Cynthia wrote about, the situation is complex, because many autistic adults are capable of appearing normal and social – to “pass as normal”, at least some of the time and in certain situations.

Jodie has in The Lie of Social Skills Trainin listed some of some key factors that make it difficult for aspies/autistics to socialise on normal terms:

  • sensory processing lag meaning you can’t process the conversation fast enough to keep up
  • trouble turning visual or abstract thoughts into words
  • literal-mindedness leading to misunderstandings
  • lack of executive function for keeping track of social engagements and who’s who
  • reduced amount of energy available for socialising, because so much is drained processing sensory input
  • not necessarily having the same pop-culture grounding as others, thanks to our often eccentric skills and areas of interest

Any one of those things could get in the way of socialising effectively, even for the most socially adept person. Most people on the spectrum have several of those things going on, and some of us have all of them.

The Lie of Social Skills Training by Jodie Van of Letters from Aspergia

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Kea’s Flight: a Book Review

Book cover for Kea's Flight
Kea’s Flight by Erika Hammerschmidt and John C. Ricker
My rating: 3 of 5 stars ★★★

 
Kea’s Flight is a strange hybrid of science fiction, political dystopia, disability rights advocacy and coming-of-age story. It takes place in the future, on a board a spaceship which moves with near-light-speed from Earth to an unknown planet, which the population on board is meant to colonise after the 21 years it takes to get there.

The entire story takes place during the space journey spanning almost 21 years.

 
The Background Story

The purpose of the mission (along with others like it) is to solve a domestic political dilemma faced by Earth’s government. Earth’s ideology and population at the time of departure can best be described as the American Bible Belt gone global.

The dilemma is that the need to prevent overpopulation on Earth and the availability of advanced prenatal screening technology that detects potential disabilities and other genetic problems in embryos and gives the future-parents the choice to bail out of the pregnancy – collides with the popular opinion that abortion is murder.

Therefore, “removal technology” replaces abortion to end unwanted pregnancies, and the removed embryos are cryogenically frozen and stored; their numbers accumulating. Eventually, a series of space colonisation missions are designed as a political solution and PR project to get rid of the frozen embryos in an ethically acceptable way.

However, all that takes place long before the story starts. Time tensions is one of the interesting aspects of the story.

 
On the Spaceship: The Plot

The spaceship the story takes place on, is one of those “garbage ships” with unwanted potential people, sent off from Earth to colonise a supposedly habitable distant planet.

The ship consists of two sections connected by a tube. One section is for its staff (“the BGs”) and the other for its people load (“the Rems”). The Rems are all mentally disabled kids – many thousands of them, greatly outnumbering their guards – with embryo-stage diagnoses like autism, Tourettes and dyslexia. They are all of the same age, since they were all gestated and raised on the spaceship under its strict, robot-enforced big-brother like regime controlled by the BGs. They have obviously never seen Earth.

Without revealing too much, the plot has to do with the fact that just like the ship’s load of disabled kids are people who were not wanted on Earth, its technology is a mix of highly advanced ai systems and crappy old computers, all of which have one thing in common: they were not wanted on Earth for various reasons, like poor quality or dangerous ai features. Even the staff are Earth rejects – selected convicts with relevant experience like child care and computer programming.

In a twist of absurdity, Earth may no longer exist at the time the story takes place. In the 21 years it takes the spaceship to reach the destination planet at near speed-of-light, 1100 years have passed on Earth and on the destination planet. Earth’s government that designed the mission, and which’s propaganda the BGs so zealously enforce, did so in an ancient past and human civilisation on Earth may have collapsed long ago.

The story follows Kea, a girl prenatally diagnosed with autism, as she grows up on the ship and later becomes part of a group of seven friends, all with prenatal mental diagnoses, mostly autism – nerds highly specialised and capable in each their area of interest such as computer programming, physics & astronomy, math, language, and politics.

The composition of the group is obviously a handy set-up for the dramas that unravel as they gradually discover the truths about the mission design and the general condition of the ship’s technology, and the ship’s government in denial. The friends all have each a unique set of abilities and vulnerabilities that makes them relatable, distinct, and highly useful for the plot.

 
My Opinion

I absolutely love the idea, the plot and the setting in space, in time, and in the design of the spaceship itself, as it is rotating around its zero gravity core with hydroponic labs and all its other other cool stuff on board (there is a drawing in the start of the book). And I love the thrill of such a whole alone-in-space-and-time society depending on crappy unpredictable low-budget technology.

 
Photo of book page with simple spaceship blueprint
Spaceship design by Erika Hammerschmidt and John C. Ricker: “Kea’s Flight”

 
I also enjoyed the action parts, all the descriptions of the ship’s interior and its society on board, and the philosophical implications.

What I did not like much was the dialogue and the characters’ tendency to waste time talking about feelings, random thoughts, sex and interpersonal issues even in extremely urgent emergency situations. I felt like shouting SHUT UP AND FOCUS, and found myself skimming pages even in high-suspension action scenes to get on with the plot and past all the talk.

I also wasn’t fond of any of the romances. I do understand how they may be relevant in the story, given that the characters are teenagers coming of age, but at times it was like reading a teenage romance instead of a science fiction story.

Also, I found the book too demonstrative about its disability / autism advocacy agenda, almost propaganda-like, using the characters to provide explanations that would have been better left out, conveyed indirectly, or maybe put in an appendix because it somewhat undermined the authenticity of the characters.

 

[Spoiler alert:]

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