A lot has been happening over the past couple of weeks, quite a few things I want to write about and ideas to explore. It’s just been a very busy couple of weeks, and all of my writing (and coding and much of my thinking) has been aimed at my day job. You know, the one that pays the bills.
Here’s a list of drafts I’ve created in the past two weeks or so that I’m working on in bits and pieces and will hopefully start pushing out in the next couple of days. Or maybe over the Christmas slowdown. (“Christmas slowdown”? Yeah, that’ll happen 🙂
Layers of abstraction and the cost of convenience
Passion and Warfare in St. Louis – an evening with Steve Vai
If everyone gave him $20
From Android to iPhone
Some notes and thoughts on WordCampUS 2017
Accidents of Phenotype
The work of art (as opposed to “a work of art”)
And one I haven’t started yet that I’ve had in the back of my mind for years and was brought to the front earlier tonight, that will likely be called What Capital Wants (see Capitalism is Skynet for a hint what that might be about).
But right now I need to put together some notes on a proposed talk about crowdsourcing innovation for JiveWorld 2017.
One of my favorite Pink Floyd songs is Brain Damage from the classic Dark Side of the Moon. Roger Waters says he wrote it in response to the pressure he felt as a teenager to fit in, to not be so different.
= = == === =====
The lunatic is on the grass.
The lunatic is on the grass.
Remembering games and daisy chains and laughs. Got to keep the loonies on the path.
The lunatic is in the hall.
The lunatics are in my hall.
The paper holds their folded faces to the floor
And every day the paper boy brings more.
And if the dam breaks open many years too soon
And if there is no room upon the hill
And if your head explodes with dark forebodings too
I’ll see you on the dark side of the moon.
The lunatic is in my head.
The lunatic is in my head
You raise the blade, you make the change
You re-arrange me ’til I’m sane.
You lock the door
And throw away the key There’s someone in my head but it’s not me.
===== === == = =
As parents we have a responsibility to our children to help shape who they are, but more importantly to help them figure out who they are. Autistic or not, we are who we are.
Last summer, I put Cooperation and the tragedy of the commons, from the Anecdote blog, in my “to blog” pile. It seemed relevant, but I just couldn’t quite figure out how. In his post about an Alliance for Autism, Mike Stanton raises the problem of reconciling the individual wishes and desires of parents and adults with autism with the long term goals of autism advocacy, which has helped me better understand the relevance.
The problem Mike raises shows up in many different domains and is known as the tragedy of the commons. Simply stated, tragedy of the commons is:
a dilemma in which multiple individuals acting independently in their own self-interest can ultimately destroy a shared resource even where it is clear that it is not in anyone’s long term interest for this to happen.
The anecdote post references a story on washingtonpost.com discussing the Democratic primary race between Barack Obama and Hillary Clinton and the results of a study done by social psychologist W. Keith Campbell. From the study:
… because the volunteers did not know whether their kindness would be reciprocated by others or exploited by competitors, people raced to cut as much timber as they could and quickly razed the forests to the ground. Groups with volunteers more willing to think about the collective good preserved their forests longer. But selfish people within these groups had a field day exploiting the altruists — and the forests perished anyway.
Campbell’s experiment is particularly relevant to politics, because he found that groups with a larger number of narcissists — people with an inflated sense of their own importance — tended to raze the forests much faster than groups in which people felt less self-important. Politics, unfortunately, happens to be a domain that self-selects people with an inflated sense of their own importance.
Political scientist Edella Schlager offers the following as a solution:
… the only way to prevent tragedies of the commons is to set up structures in advance that reward long-term thinking and punish short-term selfishness. This happens mostly among competitors who share long-term interests and have social relationships of trust: If you and I are Maine lobstermen, we are likely to agree to set up limits on the overall catch each year because we see our future, and our children’s future, inextricably linked. In the absence of trust and long-term relationships, the only way to prevent these tragedies is to have an outside regulatory agency step in to establish — and enforce — limits.
Sadly, many of the “competitors” in the autism community (communities?) don’t seem to think we share any long term interests, despite the fact that I’m sure we probably do. Nor are there too many “social relationships of trust”; even here on the Hub there is a general undercurrent of mistrust between adults with autism and non-autistic parents, stemming I think from the lack of shared long term interests mentioned above.
On the other hand, it is easy for the Hub’s “competitors”, as exemplified by the folks at Age of Autism, to avoid the TOTC: they speak with a single voice (“Vaccines are bad”, “Vaccines caused my kid’s autism”, “Neurodiversity believers are deluded and in denial”) and trust that everyone on “their side” will stay on message. There are, of course, some more reasonable voices among the bio-med group, but it is the vocal (apparent) majority that makes the most noise.
Mike is on the right track with his proposed Alliance for Autism. The first step is to figure out what our shared long term interests are, and from there work to build the trusting social relationships that we need to move forward. Who knows, we might even find that we have some common ground with our “competitors” in what we want for our kids when they become adults. Wouldn’t that be something.
I’ll kick it off with a couple of my own long term interests and goals:
My son receives an education (from me, the schools, his peers) that allows him to participate in the world around him to the extent that he chooses to participate.
The general public becomes more aware that adults with autism are adults first, that they have dreams, desires, and interests just like everyone else, and should be allowed and empowered to pursue those dreams, desires, and interests.
A legal environment that enforces the above, when necessary, in the workplace and other areas where autism, and other disabilities, are treated with disdain and disrespect.
In a recent post suggesting the formation of an Alliance for Autism, Mike Stanton raised a few issues on which parents and adults with autism as a group may need to come to some sort of agreement. One of those issues are the questions: Is autism a disability or a difference? Can it be both?
More than just an academic debate, the answers to these questions have very definite real world consequences. Disabilities are covered by various laws, policies, etc. etc.. Differences, on the other hand, are not. This was brought home to me when I read the aspie:talk post an adult trying to get accomodations. Although his her issues were more related to not having an official diagnosis, the situation presents a good point of comparison.
If treated as a disability, supported by the proper diagnosis, then the company needs to provide appropriate accommodations to allow the employee to work. If, however, autism is seen as a difference, then the company is under no obligation to provide this employee any unique accommodation.
i would lay out what accommodations you need in the workplace without referring to the medical issue… which is unsolvable at this point. just state what you need item by item as matters of personal preference, in terms of “developing a comfortable working environment” and “ways they can help you be happier and more productive.” many of the social problems you have are probably going to exist at any workplace, i would guess, i’m not sure to what extent a diagnosis would alleviate the “micro-social” situation.
Obviously, this is an area where parents and adults with autism may have some differing opinions.
Difference, or disability? What do you think? Me, I’m still trying to figure out what I think.
Frequent readers of this blog know that in my attempt to understand autism better, I have a tendency to see connections in things that aren’t always directly related to autism. A lot of times this will come in the form of a song, a TV show, or a main- or sub-theme in a movie (like the X-Men trilogy).
They say, “Hey little boy you can’t go
Where the others go
‘Cause you don’t look like they do”
Said, “Hey old man
How can you stand to think that way
Did you really think about it
Before you made the rules”
He said, son
That’s just the way it is
Some things will never change
That’s just the way it is
Ah, but don’t you believe them
“Don’t you believe them.” Don’t listen when someone tells you that you can’t change things, that this is how it was meant to be. Nothing is “meant to be”, that is the wonder of being human, that we determine what is for ourselves.
Well they passed a law in ’64
To give those who ain’t got a little more
But it only goes so far
Because the law don’t change in another’s mind
When all it sees AT the hiring time
Is the line on the color bar
That’s just the way it is
Some things will never change
That’s just the way it is
That’s just the way it is, it is, it is, it is
Note that in the chorus after the last verse, Hornsby never says “don’t you believe them”. I don’t know if this was intentional or not, but it is definitely true. You can make a law, you can tell people what they have to do, but you can’t tell them how to think about others. That takes education, persistence, and persuasion.
And that, I believe, is the challenge we all face in gaining more understanding and acceptance for autistics, indeed for all people who are different.
In this excerpt, Lou is considering what it might mean to be “healed”:
If my self definition is limited and rule-dictated, at least it is my self-definition, and not someone else’s. I like peppers on pizza and I do not like anchovies on pizza. If someone changes me, will I still like peppers and not anchovies on pizza? What if the someone who changes me wants me to want anchovies…can they change that?
Asking if I want to be healed is like asking if I want to like anchovies. I cannot imagine what liking anchovies would feel like, what taste they would have in my mouth. People who like anchovies tell me they taste good; people who are normal tell me being normal feels good. They cannot describe the taste or the feeling in a way that makes sense to me.
Do I need to be healed? Who does it hurt if I am not healed? Myself, but only if I feel bad the way i am, and I do not feel bad except when people say that I am not one of them, not normal. Supposedly autistic persons do not care what others think of them, but this is not true. I do care, and it hurts when people do not like me because I am autistic.
As I finished up my initial draft of this, I came across Estee’s post What do we think we know? We know what it is like to be us, we know how to do things, we just can’t always explain it.
Hopefully I’ll have my full review done by the end of this (thankfully long) weekend.
One of the key sub-plots in Elizabeth Moon’s book The Speed of Dark involves some corporate intrigue and an almost stereotypical management vs. labor conflict. At the heart of the issue is a question of the efficiency vs. effectiveness of the autistic workforce. It’s probably because of my recent reading of the book that Jack Vinson’s post People still say these things? caught my attention. (Attention, what attention?)
In that post, Jack references a quote that “amazes me every time I see it used in real life”:
Regrettably far too many executives remain firmly convinced that the only way to increase productivity is for their employees to work harder or faster. A chief executive in Northern Ireland was quoted in his company magazine as saying; “Any employee not producing value-added work all the time is a waste”.This attitude stems from the continued misunderstanding of productivity…
As I read this quote, what occurred in parallel in my thinking was the following:
Regrettably far too many people remain firmly convinced that the only way to be of value to society is to do more faster. A ‘normal’ person might say; “Any autistic (or other disabled person) not keeping up with me and everyone else all the time is a waste”.This attitude stems from the continued misunderstanding of an individual’s value to society.
If you are different, your difference has to be accounted for. Doing that takes time, throws a proverbial wrench in the works. And people with a plan to follow and schedule to keep don’t like those wrenches.
I don’t know where this attitude has come from, but I’d guess it has its deep roots in the Industrial Revolution and nourishment from the teachings of Scientific Management, Business Process Re-engineering, Total Quality Management, etc ad infinitum.
The mentality of work in our society has permeated our mentality of community.
After seeing a reference to it in a comment to a blog somewhere last week, I picked up Elizabeth Moon‘s novel The Speed of Dark and read it over the weekend. The novel, set in the near future (30 years or so), is the story of Lou Arrendale, an autistic man presented with the possibility of being cured, his contemplation of what his decision – either way – would mean, and the consequences of his eventual decision.
I need to process it a bit more before writing a full review, but the short version of the review goes something like this: If you haven’t read this book yet, go out and buy it now and read it tonight.
As I pull together my thoughts for the full review, I’d like to share some key passages that really stood out to me as relevant to my own contemplation of autism, neurodiversity, and a cure (among many other things). This is the first of three such posts, my goal is to have a review done by the end of this coming weekend.
Some of Lou’s general thoughts on being normal:
I do not think everyone else is alike in every way. She [Dr. Fornum] has told me that Everyone knows this and Everyone does that, but I am not blind, just autistic, and I know that they know and do different things. The cars in the parking lot are different colors and sizes. Thirty-seven percent of them, this morning, are blue. Nine percent are oversize: trucks or vans. There are eighteen motorcycles in three racks, which would be six apiece, except that ten of them are i the back rack, near Maintenance. Different channels carry different programs; that would not happen if everyone were alike.
And some of his thoughts based on a specific situation:
Sometimes I wonder how normal normal people are, and I wonder the most in the grocery store. In our Daily Life Skills classes, we were taught to make a list and go directly from one aisle to another, checking off items on the list. Our teacher advised us to research prices ahead of time, in the newspaper, rather than compare prices while standing int eh aisle. I though – he told us – that he was teaching us how normal people shop.
But the man who is blocking the aisle in front of me has not had that lecture. He seems normal, but he is looking at every single jar of spaghetti sauce, comparing prices, reading labels. Beyond him, a short gray-haired woman with thick glasses is trying to peer past him at the same shelves; I think she wants one of the sauces on my side, but he is in the way and she is not willing to bother him. Neither am I.