Unspoken Turns

I’ve always struggled with knowing when it is my turn to speak. I wrote about it six years ago in my post To speak or not to speak, that is the question. An event several weeks ago drove home to me quite forcefully that I still find the art of conversation elusive – very elusive. It was frustrating enough for me to want to write about it, but try as I may it didn’t convey the frustration that I felt. I enlisted the help of Copilot, but I still couldn’t get away from the article seeming like a ball-by-ball play of the situation instead of being about how I felt. After a lot of back and forth conversation, Copilot suggested a poem might be a better platform for expressing how I felt. So after an hour or so of collaboration, here’s the final result. Let me know in the comments how the poem resonates with you.

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Unspoken Turns
In the crowded theatre of conversation, 
I sit, a silent actor on life’s stage, 
The script eluding my grasp, 
As others pirouette through dialogue.

To speak or not to speak? 
A riddle whispered by invisible muses, 
Their laughter echoing in my ears, 
As I fumble for cues, lost in the spotlight.

One-on-one, I stumble— 
Words tripping over each other, 
A clumsy waltz of syllables, 
And the lead remains elusive.

But in the ensemble of many, 
I am a fish out of water, 
Caught in the undertow of turn-taking, 
Gasping for air, seeking my moment.

To speak or not to speak? 
A soliloquy etched upon my soul, 
As I watch the choreography unfold, 
Wondering when my cue will come.

ESP or supernatural whispers? 
The others glide seamlessly, 
Their voices weaving patterns, 
While I unravel the threads of silence.

To speak or not to speak? 
A silent plea to the cosmic director, 
Who withholds the script, 
Leaving me adrift in this conversational sea.

And so, I observe—seven decades and counting, 
A detective of human interaction, 
Yet the clues remain cryptic, 
The secret handshake of discourse eluding me.

Next time you witness rudeness, 
An untimely interruption, 
Consider the hidden struggle, 
The desperate quest to belong.

For we, the speechless wanderers, 
Navigate your world with uncertainty, 
Our turns unmarked, our cues obscured, 
Yet yearning to dance in the spotlight.

Musical Monday (2024/04/15) – We Tried

A powerful message. There’s nothing more I can add.

Louise Harris – We Tried (Official Music Video)

The world is changing all the time
And you know it ain't right
Yeah, I know you think twice
And love, it takes you on a ride
And leaves you with no respite
Well, I think I've done my time

But I
I don't want to cry

So take me where the bluebirds sing
While we lose everything
There's too much poisoning
And fly me where the birds still fly
'Cause smoke fills up our sky
'Cause we ran out of time
Oh well, we tried

Well, maybe this was meant to be
A mother wanted peace
And we were not conceived
Or maybe we were meant to win
But not enough good drowned out the sin
They watched the world cave in

But I
I can't work out why

So take me where the bluebirds sing
While we lose everything
There's too much poisoning
And fly me where the birds still fly
'Cause smoke fills up our sky
'Cause we ran out of time
Oh well, we tried

(We tried, we tried, we tried, we tried)
(We tried, we tried, we tried, we tried)
(We tried, we tried, we tried, we tried)
Oh well, we tried

Autism Speaks (but not for autistics)

Autism Speaks, despite its prominence as a major autism advocacy and research organisation, has faced significant criticism from autistic self-advocates. Let’s delve into the objections raised by the autistic community:

1. Viewing Autism as a Disease:
   • Autism Speaks was founded on the premise that autism is a disease that needs to be cured. Their original mission statement reflected this perspective.
   • Most autistic self-advocates emphasise that autism is not a disease but rather a natural variation in neurotype. We advocate for acceptance rather than seeking a cure.
2. Stigmatization and Discrimination:
   • By framing autism as a problem to be fixed, Autism Speaks inadvertently contributes to stigma and discrimination against autistic individuals.
   • This portrayal reinforces the idea that there is something inherently wrong with autistic people, perpetuating harmful stereotypes.
3. Lack of Autistic Representation:
   • Autism Speaks is primarily led by non-autistic parents of autistic children. This lack of authentic representation is a major concern.
   • Autistic self-advocates argue that an advocacy organisation without autistic voices is akin to a whites-only group addressing racism or a men-only panel discussing sexism.
4. “I Am Autism” Video:
   • One of the most criticised aspects is Autism Speaks’ “I Am Autism” promotional video.
   • In this video, autism is portrayed as an enemy, causing fear and perpetuating negative stereotypes. Many found it deeply offensive and dehumanizing.
5. Focus on Difficulties Over Possibilities:
   • Autism Speaks tends to emphasise the deficits and challenges associated with autism rather than celebrating the unique strengths and possibilities of autistic lives³.
6. Financial Allocation:
   • Critics point out that only a small fraction of Autism Speaks’ budget goes toward direct services for autistic individuals and families.
   • Less than 1/3 of 1% of their budget is allocated to the “Family Service” grants that fund services.
7. Autism Acceptance vs. Awareness:
   • Autistic self-advocates prefer a shift from mere awareness to autism acceptance. We advocate for understanding, inclusion, and celebrating autistic achievements.

In summary, while Autism Speaks aims to raise awareness and provide support, its approach has sparked controversy due to its framing of autism, lack of authentic representation, and focus on difficulties rather than possibilities.

Sources used in preparing this post:

• The Mary Sue: The Autism Speaks Controversy, Explained
• Psychology Today: A Reporter’s Guide to the Autism Speaks Debacle
• The Conversation: Autism advocacy and research misses the mark if autistic people are left out
• Autistic Self Advocacy Network: Before you donate to Autism Speaks, consider the facts
• Autistic Mama: 4 Simple Reasons I Don’t Support Autism Speaks
• Reporter Magazine, RIT: The Autism Speaks Controversy

Coming soon: Autism Awareness Day (and month)

Like many Autistic people I have mixed feelings about Autism Awareness Day (April 2nd) and the entire month of April being designated as Autism Awareness Month. Every Autistic person will have their own reasons, but here are my reasons behind the discomfort:

1. Simplification and Stereotypes:
   • Awareness campaigns often oversimplify autism, perpetuating stereotypes and focusing solely on deficits or challenges.
   • I prefer a more nuanced understanding that recognises our diverse experiences, strengths, and contributions.
2. Pathologisation vs. Acceptance:
   • I feel that awareness efforts tend to pathologise autism, framing it as a disorder to be fixed or cured.
   • Autistic self-advocates prefer to emphasise acceptance over awareness, advocating for understanding and embracing neurodiversity.
3. Lack of Autistic Voices:
   • Awareness campaigns often feature non-autistic voices, leaving out the perspectives of those directly affected.
   • We want our voices heard, because only we can provide authentic insights into their own lives.
4. Focus on Pity or Fear:
   • Some awareness initiatives evoke pity or fear, emphasising the challenges faced by autistic people.
   • Autistic advocates such as myself prefer a focus on empowerment, highlighting achievements and celebrating neurodiversity.
5. Critique of “Light It Up Blue”:
   • The tradition of lighting landmarks blue on Autism Awareness Day has faced criticism From the autistic community.
   • The colour blue perpetuates an outdated concept that autism is primarily a “boy” problem. In reality, autism affects people of all genders, including girls and non-binary individuals.
   • Autism Speaks, the organisation behind the campaign (and considered a “hate group” by many autistic self advocates), originally focused on finding a “cure” for autism. We prefer to emphasise acceptance rather than seeking a cure.
   • The blue campaign oversimplifies autism, emphasising deficits and challenges rather than recognising the diverse experiences and strengths of autistic individuals.
   • The campaign lacks representation of autistic voices and perspectives. Authentic insights from those directly affected are essential for meaningful awareness efforts.
6. Autism Acceptance vs. Awareness:
   • Many autistic individuals and organisations promote Autism Acceptance Month instead.
   • This shift emphasises understanding, inclusion, and celebrating autistic achievements.

In summary, while awareness efforts have their place, we as autistic people seek a more inclusive, respectful, and informed approach that recognises our unique perspectives and strengths.

Being autistic in a neuronormative world

I am not a puzzle to be solved
I am not a problem to be fixed
I am not a disorder to be cured
But I am a person to be understood

You study me like a specimen
You test me like a machine
You observe me like a stranger
But you never talk to me

You think you know what's best for me
You think you can speak for me
You think you can change me
But you never listen to me

You ignore my voice and my choice
You dismiss my feelings and my needs
You devalue my identity and my dignity
And you never respect me

I am not your research subject
I am not your charity case
I am not your burden
But I am your equal

I have a voice and a vision
I have a passion and a purpose
I have a life and a story
And I want to share them with you

The History of Monopoly: From Protest to Profit

Monopoly is one of the most popular and iconic board games in the world, with millions of copies sold in over 100 countries and 37 languages. Of the many games to be found in the resources for children and young adults in our local Friends Meeting House, Monopoly is conspicuously absent. The goal of becoming the sole land owner by bankrupting the other players really isn’t in the cooperative spirit that Quakers like to cultivate.

But did you know that the game has a hidden history of social activism, controversy, and innovation? In this article, written with the assistance of Copilot, we will explore how Monopoly evolved from a tool to teach about economic inequality to a symbol of capitalist success, and how some people are trying to reclaim its original spirit by creating alternative versions of the game.

The Landlord’s Game: A Critique of Monopoly

The origins of Monopoly can be traced back to 1903, when a woman named Lizzie Magie created a game called The Landlord’s Game. Magie was a follower of Henry George, a 19th-century economist who advocated for a single tax on land to prevent the concentration of wealth and power in the hands of a few landlords. Magie designed the game to illustrate the negative effects of monopolies and to promote the idea of a more equitable society.

The Landlord’s Game had two sets of rules: one that followed the conventional system of property ownership and rent collection, and another that encouraged cooperation and shared prosperity. In the first set of rules, players competed to buy properties, charge rents, and drive their opponents to bankruptcy. In the second set of rules, players worked together to create a common fund that paid for public services and utilities, and shared the income from the properties. The game also included a “Prosperity” rule that ended the game when the total wealth of the players reached a certain level, and declared everyone a winner.

Magie patented her game in 1904 and self-published it in 1906. She also tried to sell it to several publishers, but they rejected it because they thought it was too political and complex. However, the game gained popularity among progressive groups, such as college students, Quakers, and socialists, who used it as a way to educate and organise people around the issues of economic justice and reform. The game also inspired several variations and adaptations, such as the Anti-Monopoly Game, the Suffragette Game, and the Georgist Game.

Monopoly: A Story of Plagiarism and Profit

The game that we know today as Monopoly was not invented by a single person, but by a series of people who modified and improved the original Landlord’s Game over the years. One of the most influential figures in this process was Charles Darrow, a salesman from Pennsylvania who learned the game from his friends in the 1930s. Darrow made some changes to the game, such as adding the names of Atlantic City streets, the railroad stations, and the utilities, and drawing a colourful board with illustrations. He also simplified the rules and eliminated the cooperative option, making the game more competitive and exciting.

Darrow began to sell his version of the game by hand, and soon attracted the attention of Parker Brothers, a major game company. Parker Brothers bought the rights to the game from Darrow in 1935, and launched a massive marketing campaign that made Monopoly a huge success. However, Parker Brothers also tried to erase the history of the game and its creator, by claiming that Darrow was the sole inventor of Monopoly and by suing anyone who tried to produce or sell similar games. Parker Brothers also ignored the fact that Darrow had copied the game from others, and that Magie still held a patent for The Landlord’s Game.

Magie, who was still alive and active, was outraged by the plagiarism and the distortion of her game. She tried to challenge Parker Brothers and to expose the truth, but she was largely ignored and silenced by the media and the public. She sold her patent to Parker Brothers for a meagre sum of $500, and died in 1948, without receiving any recognition or royalties for her invention. Meanwhile, Darrow became a millionaire and a celebrity, and Monopoly became a global phenomenon and a cultural icon.

Co-opoly: A Return to the Roots

In recent years, some people have tried to revive the original spirit and message of The Landlord’s Game, by creating alternative versions of Monopoly that challenge the dominant narrative of capitalism and competition. One of these versions is Co-opoly, a cooperative board game that was developed by a group of game designers and activists in 2018. Co-opoly is a “conversion kit” that transforms Monopoly into a game where players work together to protest land assemblages and halt the construction of luxury condos. Players bring activists to the city via public transport, and drive them to locations where they can build housing co-ops consisting of tiny homes. The game ends when the players have successfully created a sustainable and inclusive community.

Co-opoly is not only a game, but also a statement and a movement. It is a way to reclaim the history and the potential of Monopoly, and to use it as a tool for social change and education. It is also a way to celebrate and promote the values and practices of cooperation, solidarity, and democracy, and to challenge the myths and realities of capitalism, inequality, and exploitation. Co-opoly is a reminder that Monopoly is not just a game, but a reflection and a representation of our society, and that we have the power and the responsibility to shape it according to our vision and our needs.

Living in sin

What an outdated concept that is. And yet it still pops up in evangelical and fundamentalist Christian literature. I like this observation made in ministry at a Quaker wedding:

A woman came to me several years ago. She had left her abusive husband, had lived by herself for a number of years, then had met a wonderful man and began dating. After a year, they decided to move in together. She admitted feeling guilty about living together.

“We’re going to get married soon,” she told me. “I don’t like living in sin.”
I asked her why she called it living in sin.

She said she’d been taught that living together outside of marriage was sinful.
I told her I disagreed, that I thought living in sin was when you promised to love, honour, and cherish someone, then didn’t.

I think there’s a lot of married people living in sin.

I agree entirely.

“I feel your pain”

I have had that comment made to me on several occasions following a blog post I’ve published, or in response to a comment I have made on someone else’s blog, and many more time in face to face contact. This always amazes me because they seem to feel something I don’t. I’ve often wondered why they make such a claim. Is it because they wish to indicate empathy? If so, why not simply tell of a similar personal experience? Or is it because in my telling of the story, you do, in some way, sense something that makes you feel some sort of pain – as if it had actually happened to you?

At one time I used to think that “I feel your pain” was just a meaningless expression used by people to indicate that they have been listening, but have no intention of making a practical response. But in the years since I discovered I’m autistic I’ve learnt that many people do actually experience some kind of emotional pain that they perceive others have experienced, even if the other person hasn’t. Perhaps a better way of explaining it is that they feel an emotional pain that they would experience if the situation relayed in the retelling had occurred to them.

In telling a story about a situation that would have been better had it not happened, that is exactly what I am telling – an event/situation that should not have happened. As far as I’m aware knowing that something should not have happened does not mean that somehow I should experience some sort of emotional pain. It’s not about me personally, it’s about wrongness of the event/situation. It shapes my ethics and morality and is shaped by my ethics and morality.

I’m going to ramble just a little more before I get to the point. Architects and others involved in the design of social gathering places such as shopping malls, pedestrian precincts, and theatres design them to attract people. And on the whole that is precisely what they do. But some people – many autistics for example – are hypersensitive to the sights, sounds and activity that occurs in such places. Instead of being desirable places they become disorientating places of pain and discomfort, triggering our fight, flight or freeze instinct. And yet when we describe what we experience in such locations, the typical response is to dismiss it as if we’re simply imagining or exaggerating what we experience – it’s not actually real.

Occasionally I will open up to others about how I experience aspects of the world around us differently from them, exposing a vulnerability that another might perceive as a weakness. Often others will express sympathy and indicate that they understand, but usually they don’t. A typical example might be after I explain how unpleasant a shopping mall can be they express something like “I hear ya. They’re noisy places aren’t they?” and then in the next breath, invite me to join them for lunch or coffee in a shopping mall food court so that they can learn more about autism! When I protest that I have just explained how such places are so unpleasant and I’d prefer to eat somewhere else where there’s less noise, commotion, and harsh lighting they respond by suggesting I simply relax, ignore the surroundings and enjoy the food. And besides it’s not really that noisy and bright anyway!

The avoiding of eye and physical contact

My whānau is of the hugging kind, and like to hug when we meet and greet, and when we say our goodbyes. I however, do not, and instinctively tense up whenever I’m embraced. It’s unpleasant and I’ll attempt to escape as quickly as I can. Most, if not all of my family are aware that I dislike hugging, but nevertheless, every time we meet I am hugged by each and every family member! Even though it might be more brief and less intimate than with others in the whānau, it is still very unpleasant. They might as well whack me over the head with a sand filled sock. I don’t think it would feel any worse. And then it’s supposed to be repeated when we eventually go our separate ways!

I have only ever once spoken publicly about being autistic, during which I explained why I find eye contact, hugs and handshakes so unpleasant. It was an impromptu, unplanned occasion and I managed to stumble my way through around ten minutes of describing my experiences. After I had spoken, several people came up to me to say they gained a new insight into how autism affects people and then attempted to shake my hand. Usually when someone wishes to shake my hand I comply as attempts to avoid a handshake are invariably misconstrued as some form of hostility. However, as I had only moments before explained why I find a handshake was so unpleasant, I felt I was justified in making it clear I did not want to do it by deliberately putting my hand behind my back when they presented their hand. For one person there was clearly a light-bulb moment, and they apologised for their thoughtlessness. Although I’m poor at reading facial expressions and body language, it was rather obvious that another was offended by the withdrawal of my hand, and as she left in a huff I heard her say comment to her friend “How rude! Are all autistic sufferers like that?” and her friend saying “Yeah, they don’t care about being rude. They can’t empathise – they’re only interested in themselves”.

The reason? I can only suppose that it’s not possible for neurotypical people to put themselves into a uniquely autistic situation. Were the circumstances or situation is somewhat similar to what they have experienced previously, most people seem to be able the empathise with my experience and then project their emotional response that they feel onto me. But when a uniquely autistic experience is explained to them, they cannot empathise and dismiss my experience as inconsequential.

Here’s the rub: every time I interact with someone it must be on neurotypical terms. It’s all well and good to say I should be more assertive or to stand up for myself, but doing so is almost always counter productive. As in the example of the woman and her friend above, even when it’s known that the reason I do some things or avoid some things is because I’m autistic, there is still an assumption that it’s an anti-social choice on my part because autistic people are anti-social and/or only interested in themselves and don’t really care about the feelings of others. And if the other party is unaware that I’m autistic, an assertive stance on my part is invariably perceived as hostility, a personal insult, or worse, deserving of an “appropriate” counter response. Sometimes that includes violence.

In the first paragraph above, I wrote “If so, why not simply tell of a similar personal experience?” This is what I and many autistic people do to show our empathy. It’s in the sharing that we demonstrate our empathy. It’s usually misinterpreted by non-autistics as being an attempt to draw attention to oneself, of being self-centred. Be honest, was that what you thought when you read that sentence for the first time? Perhaps It might be better to pretend I empathise emotionally by lying – to say “I feel your pain” even though I don’t. But like most lies, it will eventually be found out, and I don’t know of anyone who doesn’t feel hurt and/or betrayed when they discover they have been lied to.

Ethical absolutism vs ethical relativism?

Where do you stand? I’m sceptical that there there is any moral or ethical stance that is absolutely true regardless of time, place or circumstance. And yet there are some situations where I feel there is no other possible ethical/moral stance other than the one I hold can ever be acceptable. So I ask myself is this because this is a case of ethical absolutism or is it that my experiences as an autistic person living in a largely secular and liberal society conditions me to be blind to any other perspective. I really don’t know.

According to ethical absolutism, there are objective moral values and principles that are always valid and correct, regardless of time, place, circumstance or people. For example, some people may believe that lying is always wrong, no matter what the situation is. Ethical absolutism is often associated with religious views, as it implies that moral law is grounded in the very being of a deity or deities.

There seems to be one moral principle that humans universally hold to be intuitively valid and correct, and that is the “Golden Rule”: that we should treat others as we would want to be treated. This appears to be true across recorded history regardless of culture or religion, and some might reasonably claim that this is an example of ethical absolutism. But is it?

Personal experience tells me otherwise. I have little doubt that other autistics have had similar experiences. Often when I have treated others as I want to be treated, I find myself in hot water, with responses ranging from annoyance to anger to physical violence. Similarly when others treat me the way they want to be treated I find myself between a rock and a hard place. If I act honestly, I also find myself in hot water with responses no different to those I have just mentioned, and if I hide my true self then I quietly allow myself to be subjected to treatment that ranges from unpleasant to extremely painful. So regardless of whether I apply the Golden Rule, or others apply it to me, I tend to suffer.

So I now apply my own golden rule: treat others how you believe they want to be treated, and if unsure ask. It’s one that I’m beginning to ask others to apply to me, although it’s taken me 70 years to learn how to ask. Of course there are some people who are offended by me asking – whether it’s asking how they would like to be treated or asking them to treat me how I like. But that’s another story for another day.

Getting back on topic: According to ethical relativism, there are no objective moral values or principles, but rather they are relative to some further instance, such as culture, society, individual, or situation. For example, some people may believe that lying is sometimes acceptable, depending on the context and the consequences. Ethical relativism is often associated with tolerance and diversity, as it acknowledges that different groups may have different moral standards.

It appears to me that both ethical absolutism and ethical relativism have some advantages and disadvantages (although I strongly favour relativism), and they raise many questions and challenges. Some of the issues that they deal with are:

• How do we determine what is morally right or wrong?
• How do we resolve moral conflicts or disagreements?
• How do we account for moral diversity and change?
• How do we justify our moral judgments and actions?
• How do we balance our moral obligations and rights?

I’m not sure that these questions have easy answers, and perhaps they don’t have an answer even after careful reflection and dialogue. Some people may prefer one ethical perspective over another, while some may try to find a middle ground or a compromise. What I can say is that some of my ethical views have changed over time in response to new experiences or information, while others have become more entrenched. How about you?

So, I’m becoming curmudgeonly in my old age

I’m not one for demanding others live as I do, in fact I really appreciate the diversity of the human condition. And I don’t mind how others celebrate the bringing in of a new year. As Aotearoa is the first nation in the world to bring in the New Year (if one excludes from tiny Kiribati, population 120,000), perhaps we have more reason than others to celebrate. But what I don’t appreciate is how obtrusive some folk are when they celebrate.

Fireworks can be purchased by the general public only on a few days before November 5 each year. I won’t go into the reason why here, but there seems to be a trend away from lighting them on that day, which more often than not is wet and windy, and instead putting them in storage until New Year’s Eve. Then on the stroke of midnight setting them off terrifying pets and waking the neighbourhood.

Apart from the hazards of storing gunpowder in one’s house or garage for almost two months, have any of the folk who celebrate the New Year by letting off fireworks at midnight thought about how it affects animals and humans? I really don’t appreciate being woken at that time by the sounds of exploding fireworks. Nor does our cat Frankie. Admittedly from our home perched at the top of a hill overlooking our township, the spectacle is quite amazing to watch, and if I’d been awake at that time I might have actually enjoyed it. But I wasn’t and I didn’t.

At the time of publishing, this post, the New Year arrived 12 hours and 6 minutes ago, but i’m still feeling no better now than I did when rudely woken at midnight.