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The innocent revenge of Mary’s body

The innocent revenge of Mary’s body

In 2011 one of my friends died after a long chronic illness, and an assault which exacerbated it all. She had sarcoidosis and some other illness which specialists could not figure out, and later also tuberculosis (picked up from a little street kid who slept on her...

read more
Gestures and glances

Gestures and glances

I have never met an autistic person who uses a letterboard or keyboard to communicate saying that they were happier when they were only using a few gestures and glances. Parents who deny their children the right to develop the motor skills for communicating in full,...

read more
Planning the QAnon ARG: What was it like to be there?

Planning the QAnon ARG: What was it like to be there?

Understanding that QAnon was a psyop pitched in a PowerPoint presentation in a meeting, paid for by a client, and then designed and run in fulfilment of a contract like a marketing campaign makes my mind go to the scenes where the ARG designers decide what to put into...

read more

How much do psychologists know?

This morning, on Twitter, someone posted this:

You are at work and have to run a meeting. A traumatized little is frontstuck and you have 12 minutes to calm them down. #DIDNightmares (Based on a harrowing true story)

https://twitter.com/10CatsIn1Coat/status/1518679179008618498

I wondered whether the average English-speaking psychologist would even know what that means. I do know for sure that it takes a beyond average one to help a client develop strategies for situations such as these.

How much would a psychologist who’s living life largely away from social media understand of the person’s Twitter bio, and why those terms are in there?

A bunch of cats in a thirty-something DID coat, learning to thrive. Agile coach, pinballer, novelist, gaymer, visually impaired, they/she/he

The Arcades @10CatsIn1Coat

Are you in touch with patient communities, and learning from them?

Motivation

Once upon a time someone invented homework.

So two people called Cameron and Kelli decided to get married.

They found a house with an untidy bedroom in it and moved in.

Cameron said, “Kelli, you know I didn’t marry you for nothing. There is homework and an untidy bedroom. What do you think we can do about this?”

“I know what!” said Kelli. “We can have a baby, and when he is old enough, he can do the homework and tidy the bedroom!”

“That is a good idea,” said Cameron, “but what if he doesn’t want to do it?”

“Then we will motivate him!” said Kelli.

So they had a baby and named him Uriah.

After a few years, the heap of messy things on Uriah’s floor was bigger than ever before, and there were creepy-crawlies living in it. Meanwhile, Cameron and Kelli also made Uriah go to school and bring home homework!

But Uriah didn’t tidy the heap and he didn’t do the homework, so Kelli decided that it was time to motivate him. She discussed Uriah’s behaviour on Facebook and WhatsApp, getting advice from her mother, from other mothers and from a child psychologist. Some said she should use a star chart. Others said she should use punishment. And yet others said she should do it along with him and make it into a game.

But in spite of everything she did to motivate him, Uriah didn’t meet their expectations.

Kelli then got Cameron to to talk to him. Cameron said that if Uriah didn’t tidy the heap and do his homework, he wouldn’t have a job one day.

Still, Uriah didn’t do his homework or tidy the heap.

Then one day Kelli called Uriah to supper but he didn’t come, so she stomped up to his bedroom to look for him. As usual, she saw a pile of homework which he had not done, and the mountain of untidy things that reached to the roof—but no Uriah. Kelli looked everywhere: under the bed, in the cupboard, and even behind the curtains.

Then something told her to look inside Uriah’s heap, and what she saw there shocked her beyond her wildest imagination.

To be continued in another life.

The innocent revenge of Mary’s body

In 2011 one of my friends died after a long chronic illness, and an assault which exacerbated it all. She had sarcoidosis and some other illness which specialists could not figure out, and later also tuberculosis (picked up from a little street kid who slept on her bed when she took in 12 street children after the shelter where she helped to care for them was shut down). Her organs gave in gradually. The autopsy showed that there was extensive necrosis for some time before she actually died, leading the coroner to question the actual date of her death. She died in great pain. A month before that, knowing full well that she was dying, we were still making jokes about death.

Mary been rejected by her parents when she was born, but they raised her older sister and younger brother. Mary grew up in the home of a woman she thought was a foster auntie but who turned out to be her grandmother. To make a long story short, her parents didn’t like her, but she died in their home anyway. She was rejected also by the church where we’d been an active members. I’d left some time before her, but she stayed on—or tried to. The church people said that she wasn’t making enough of a sacrifice, that she should try harder to come to church. But she couldn’t, she was too sick, she was in too much pain, and the church people wouldn’t visit her at home. Once, some people came who were in the process of leaving the church too, and she had cousins who supported her very kindly in the weeks before she died, with a bit of help from Hospice.

There were many days that she had to stand in queues when she could barely stand, waiting for her turn at the SASSA office. She also got her disability grant at last not long before she died.

Mary was very, very fat due to her illness. Even when she ate very little, her body stored the food instead of converting much of it to energy. And you know how people talk about fat people. Anyway, as you can imagine, her coffin was bigger than normal, and the men—relatives—who had to lower it into the grave underestimated the task and started slipping into the grave while screaming in whispers. Some of us started giggling, because everything in that moment was supposed to be dead quiet, and the sky was appropriately sombre, and there was a drizzle. It was the highlight of the day for me, it was the moment that gave me closure. My friend was not a malicious person at all, even toward the people to whom she might justifiably have felt wrath. She was devout, prayerful and wished for the best for everyone. I felt a sense of relief and satisfaction at the teasing revenge that her enormous heavy body was having in that moment on the people who never loved her with the depth she deserved, who wouldn’t fully help her in her life, and who treated her badly for taking up space in the world.

Working definition of autism

Boy, as though all the definitions of autism out there are not enough, that I couldn’t just pull one off the Web from a site that I like to explain this quickly in two sentences for a 5-minute talk to a corporate audience, along with talks by Louise, Debbie and Dudley. Even this definition, from a research lab’s site at usually has good stuff, isn’t helping me:

Autism is an untapped reservoir of creative solutions, by nervous systems that grow and evolve in uniquely different ways.

New Jersey Autism Center of Excellence

In this article, which I wrote exactly two years ago, I talk about how difficult it is to define autism, leaving me with just another too-broad-to-be-meaningful placeholder definition:

Autism is an umbrella term for a specific cluster of neurodevelopmental endophenotypes — or, more accurately, a cluster of clusters. As such, it sometimes makes sense to speak of autisms, the plural, rather than just autism.

But hey, tomorrow is our dry run, so lemme panel-beat this into something a little more specific for tomorrow:

Autism is a neurodevelopmental disability—in other words, it’s about how our nervous system has developed from before we were born. We are different from most people in how we take in and process information, and how we think and move. This also affects how and what we communicate. Autism is an umbrella term: there’s a lot of variety among us. Most of us struggle if the environment isn’t ideal for our sensory and other information-processing differences. We generally have strong pattern-recognition, and some of us are good systems thinkers. Although many autistic people cannot rely on speech to communicate, most nonspeaking autists do not have an intellectual disability.

Now how do we make this short?

Gestures and glances

I have never met an autistic person who uses a letterboard or keyboard to communicate saying that they were happier when they were only using a few gestures and glances. Parents who deny their children the right to develop the motor skills for communicating in full, nuanced sentences, paragraphs or even chapters, anger me.

Communication is a human right. The methods exist. If you have the means to get this for your children, do it. If you don’t know where to go, ask me. If you don’t have the money, tell me, so that we can find a way together to get beyond that hurdle.

If you want to come to me with excuses, I will delete your words. You have the right to tell me what you think using gestures and glances.

Planning the QAnon ARG: What was it like to be there?

Understanding that QAnon was a psyop pitched in a PowerPoint presentation in a meeting, paid for by a client, and then designed and run in fulfilment of a contract like a marketing campaign makes my mind go to the scenes where the ARG designers decide what to put into the game.

I wonder who the voice of doubt was who said, “Dude, you can’t put lizard people and face-swapping and celebrities drinking babies’ blood into there, that’s just too crazy, only a few nutcases will fall for that!”

And who was the straight-faced experienced mindf*** specialist who looked them in the eye said, “I know my job. We throw every f***ing bogeyman story into the mix. If you keep it too close to reality, you lose them. You gotta take them all the way down the rabbithole.”

QAnon apophenia map with masses of words and arrows connecting things like it's a huge conspiracy.
A popular conspiracy map used by QAnons for figuring out clues in the ARG

Was there any point at which they broke into laughter from the belly, as people fell for it, and giggled naughtily after agreeing on the wording before putting out the next Q-drop, like any creative team may feel mirth about the outputs of their own creativity?

Or was it just humourless formulaic work, done acccording to a calculated recipe, because after all, it’s a serious paid-for terrorist psyop run by specialists in the field?

QAnon is not magic.

Qanon is not free thinking.

It’s not deeply philosophical libertarian or honestly anarchic.

It’s not even a bona fide cult.

It’s just a psyop sponsored by a kleptocracy.

It’s as banal as that.

They take up beds

Photo by Mufid Majnun on Unsplash (edited)

“They take up beds. They brought this upon themselves, and infected others. They don’t deserve to get care when resources are limited.”

I used to think like this, but I was reminded that if we start denying people medical care because of poor choices in respect of COVID-19, it’s the start of denying people help if they are smokers, or fat from overeating, or alcoholics, or if they attempt suicide. And this type of thing does actually happen already, just not directly or overtly.

Mel Baggs was asked three times whether they were sure that they were making the right decision, before doctors gave them a feeding tube. The other choice was death. And it wasn’t even a ‘lifestyle choice’ that caused Mel’s chronic illness. Mel titled their second last blog Ballastexistenz, the Nazi word for the ‘useless’ existence of disabled people who ‘use up resources’.

But Mel was living in modern-day America, not in Nazi Germany.

Whenever I complain about the medical and nutritional neglect of my friend in prison, people ask what crime she committed, as though they want to use that as a basis for how much food or pain relief she should be allowed.

I think she should be allowed to live. I don’t think she should be executed slowly, dying from a migraine lasting years, and from sensory overstimulation, leg cramps, extreme constipation, loss of speech and uncontrollable muscle spasms due to a simple mineral deficiency. I think she should not be slipping in and out of consciousness in pain for days before being allowed to go to hospital, while her body fills with fluid. I think she should not have to sleep on the bathroom floor in midwinter after surgery for endometriosis.

So, people who refuse to be vaccinated when they could be, who call COVID-19 a hoax, who refuse to wear a mask when they could wear one, who refuse to keep a distance, and who in every way endanger others, may be exhibiting criminal behaviour; but if we deny them medical care, or move them to the back of the medical queue as a punishment, then who else should we treat like this?

Maybe I’ll reconsider this when it becomes a war. Or is it a war already? If so, I have friends who are enemies, and I don’t want them dead.

When you’re autistic, they try to kill your questions

Photo by Bruce Mars (edited)

A core feature of being autistic is enquiry, i.e. searching for understanding; asking why. Just because some autistic people don’t ask out loud doesn’t mean they are not wondering about the why.

If you are going to try to make an autistic person smile for the camera or smile when greeting people, you really need to sort out the rationale for those things in your own head before you embark on such a mission, so that you can explain properly why you need that to be done. In fact, workshop this with a few people. Include some autistic people in the conversation. Ask whether one should necessarily smile in these situations, and if so, why.

The whying in autism can be a good thing (unless it drives you into analysis paralysis; but there are ways of dealing with that). Whying can lead to learning, solving and inventing. While autistic people can be significantly disabled, honing traits like whying can be useful for everyone.

But

that’s

not

what

most

therapists

think.

ABA, PBS and PECS are designed to kill the why and focus on the what. (Read more about ABA here.) De facto, this type of ‘therapy’ also shifts focus to the who: whom must I please by doing what, to get relief. And then there’s the question of how much: how much of this must I do before I get a break or reward.

The how question tends to be underemphasised in therapy too; or it’s messy, because most autism therapists are unaware of the obstacles to execution, so their way of teaching gets the how wrong. (Here is an example of how therapists get their how wrong, because they don’t understand the problem.)

Much of autism therapy is why-starved. An analogy, albeit an obscure one, springs to mind from the work of Chandler Marrs on malnutrition among Westernised people who aren’t necessarily poor: Therapies like ABA are like an expensive diet which leaves you malnourished and leads to a complex cascade of sickness, fueled by industries focused on the what but not on the why.

About the Autism Western Cape petition to Parliament

People asked me what I think of the petition from Autism Western Cape (AWC) which is to be handed over to Parliament in a march on 21 May 2021. When I saw the petition, I wrote the letter below to Mduduzi Dube, the Managing Director of AWC. Upon receiving his reply, I signed the petition. I encourage you to do the same, and to join the march. — Tania Melnyczuk


Dear Mdu

Thank you for highlighting some of the important problems faced by autistic people and their families in the form of a petition.

I would very much like to encourage others to support this initiative. Throughout lockdown I have been helping poor disabled people and their families where they were unable to get support from larger organisations (including AWC). For fundraising, I’ve worked through small charities like the Jason Foundation and Raising Hope, parents of autistic children and adults and other supporters. I’ve collaborated with therapists, educators, and community activists. I’ve also encouraged direct donations to affected individuals, to buy food. Health concerns and the dire lack of educational support from government are frequent themes of conversations with the parents I talk to.

But I just want to clear up some things before I get people to sign the petition or join the march. (There are also a few items on the petition which I would want to see worded differently, as they do not correctly represent the priorities of nonspeaking autistic people.) I have raised some of these questions with AWC before, but I haven’t had any clear answers, so I will ask again, including some new questions. I’ve marked questions in bold to make it easy to skip to them.

Implications of the CRPD: Representation

AWC does not represent autistic people, as per the requirements of the CRPD (see Section II.B of this comment note). To be a representative organisation, it would need to have a board membership of over 50% autistic people, which it doesn’t currently have. To best represent autistic people’s interests, some of these people would have to represent the demographics of the autistic population, e.g. it would need to include Black, nonspeaking, and other diverse autistic people. Parents and caregivers are important stakeholders too, but they do not speak on our behalf.

The question is, does AWC intend transforming to become a representative organisation, and if so, when? If not, can we talk about ways of ensuring that autistic people are represented at least through consultation, since our province does not have a formally registered representative organisation for autistic people? It is only right that if you are going to talk to government about autism, actual autistic people need to be regularly consulted on the goals of such discussions, the approach, and the message which is being put across. The lack of a consultation process is currently contributing to the perpetuation of abuse and neglect. We are not even on Level 4 of Arnstein’s Ladder of Participation yet. We are merely being informed of what your plans are.

Input into approaches used in schools and institutions

Right now there is no way for autistic people to directly influence policies or practices in schools and institutions other than approaching parliamentarians as individuals. Through the years I have frequently come across abuse and less-than-helpful practices, with no formal mechanisms for addressing these issues. At the moment we’re working to change this via the SASLHA Special Interest Group (SIG) on Autism established in February, but the process is slow, and could benefit from more collaboration with other organisations such as AWC, provided that AWC can commit to listening to autistic people first and foremost. This SIG is eventually intended to become cross-disciplinary. I proposed for the group to include one of my fellow activists, Zekwande Mathenjwa, who is nonspeaking, and this was unanimously accepted. Zekwande is a survivor of abuse at the hands of educators. He recently resigned from school to pursue activism full time.

I frequently correspond with nonspeaking autistic people like Zekwande locally and internationally, and there is a great need to listen and change the way things are done for these most marginalised people in our community. It is no coincidence that some of the participants of the internationally acclaimed short documentary LISTEN (including the narrator, Bobby Shabangu) are South African: it’s because we work at this. We want to be able to give access to AAC to nonspeaking autistic people throughout Africa, and we know that many will never be able to afford it. (Read more here.) We know that we need to do fundraising and lobby governments for these services. But we have very little access to decision-makers in existing schools which could benefit enormously from listening to actual autistic Africans.

I collaborate with autistic activists in Kenya, Algeria and other African countries as well. Some of them in Nigeria and Uganda are too poor to maintain regular contact via WhatsApp and social media and the rest of us are making plans to try to donate our own money across borders to them just so that they can stay in touch. Parent-led organisations in other African countries are also not listening properly to autistic people who want to be able to improve practices, to prevent what happened to them when they were growing up.

I am afraid that if we approach government to just duplicate what we already have in special needs schools in South Africa, we will also be duplicating everything that is wrong in these schools. Can we talk about this, so that the input of autistic people regularly feeds into goals and policies? There is also a wealth of support available from survivors of abusive institutions in other countries too, and we can learn from them to start helping some of the people who are being abused locally. We can also avoid future abuse by learning from these survivors. Some have high support needs. Some serve on the boards of disability rights organisations.

Research

Autistic people are currently not treated like the primary stakeholders of autism research by the most prominent researchers in South Africa. This is a violation of the principles of the CRPD. AWC is an award-winning organisation and we have scientists in South Africa who have also won awards for their stakeholder engagement. But actual autistic people did not issue any of those awards. Autistic people, the main stakeholders, are not being properly consulted. I have asked before how to get actual autistic people’s research priorities to the top of the autism research agenda, and I was blocked. We are not requesting for this to change. We are demanding that it must change. Autistic researchers who attended INSAR 2021 were horrified at the way these scientists openly talk about autistic people. There are scientists who support abusive practices that violate human rights. They design their studies without autistic people guiding them. They interpret the results without autistic input. The goals of some of these studies are off the mark. Are you going to help us to change this by getting autistic Africans’ research priorities met, to meet the needs of the poorest autistic people, or are you going to tell autistic people what you think is best?

Autistic people want to help other autistic people. We want to make a difference. Here are some priority areas that some of my fellow activists and I have for 2021.

Where would you like to see autistic people on Arnstein’s Ladder of Participation by the end of 2021? Do you have plans for how to achieve this, or do you need some help in figuring out how to do this?

Tania Melnyczuk
Autistic Strategies Network