Tuesday, October 31, 2017

#31for21 Treeks and Treats: Agnieszka Productions; Sujeet Dessai and six instruments; Bethan Pickard thesis


December 2013 I discovered Agnieszka K and her younger sister Magdalena.

I suppose I was looking for homeschooled students and their creativity and their wild life in Wales which really appealed to me. 

http://oakwellbarns.co.uk/downs-syndrome/he-ds-home-educating-your-child-with-downs-syndrome/

My little sister - the series - began in 2008 when Agi was 8 and Magda was 4. This year Agi is doing IGCSEs in Spanish; Art; English Language; English Literature and a vocational qualification in filmmaking. She has been to a variety of festivals.

What really comes out in My little sister 9 is Magdalena's love of investigations and of science.

And it was good to find a Hallowe'en related video from Agi K's work. She worked on that with several friends.

I think it was because I was reading a few women's magazines and journalism pieces from a ghost writer and storyshaper - one of the stories happened to be about My little sister and Magdalena and Agi's relationship.

I also may have come across it through Natty and Mia and Hayley Golienowska and their work - the two have just won a Youth Award.

And I probably didn't visit for another three years or so. Agnieszka Productions, was, however, placed into my StumbleUpon account.

Here is the very first My little sister:

Magda was nearly 5 years old when this film was made. Agi talks about the games they like to play together and the time and effort they spend together as sisters.

Wouldn't it be great to go on a retreat at Oakwell Barnes in Wales?

Their Mum and Dad are Anita and Alex Kolaczynska. The Mum wrote a book on Breastfeeding and Down Syndrome which was published in 2016.

When Magdalena was born from 14 February 2013 - Magda was born in 2006; Agi in 2003.

Born Stroppy page by Anita describing Magdalena's party when she was 10.

Agi K's films including My Little Sister series - $5.95 for each film to rent and $11.95 to buy.

What do you know about ladybirds, Magdalena? My little sister 8 [2016 trailer]. I liked that's science and that doesn't tell you anything and the scene on the beach reminded me of the Du Pre sisters Hilary and Jacqueline.

The first seven My Little Sisters can be bought for $11.70 Australian from VIMEO.

A long time ago there was this Children on the hill family who were raised by Maria and Martin. There was Ruth; Adam; Christian and Paul. There had been a great deal of detective work. And they were also Welsh.

Vimeo on Demand MY LITTLE SISTER 1 to 7

Vimeo on Demand: My Little Sister 8 which is 45 minutes long.

My Little Sister 9 is 55 minutes long.

And I remember too following the Polish players in the Hopman Cup in 2014.

And calls from various family members.

Grandmere had shared a letter from 2011 from one of her friends.

And because I missed out on James Blunt yesterday, here is one from Agi K!

She made some good ones with Abi Foster and Charlie XCX and many great UK independents of the early 2010s.

Magdalena tells lots of stories in part 4. The opener is a good one! She is memorising Doctor Foster. And she likes to act out the rhymes she knows and doesn't know.

"Fairies are my friends".
Magdalena Kolaczyska 

And she is good at looking at plants and fruits.

A change of pace:

while I was researching and learning about Sujeet Desai's latest performances in Trinidad and Tobago with a school orchestra, I remembered the Riverbend website who work in Southwestern Illinois.

Bethan Pickard was based at the Royal Welsh College of Speech and Drama when she wrote Music and Down Syndrome. The author is a flautist.

There was a historical evaluation and wide-ranging information about everything musical from rhythm to musical give-and-take.

I definitely agree that improvisation is one key to learning and appreciating music theory and practice.


Monday, October 30, 2017

#31for21 #themmlinky Folxs; folk psychology and folk physics / No-one is to blame

Perrault. Is. So. Hard.

That is probably what a whole lot of folklorists are feeling at the moment, especially the ones who translated Cendrillon for an Anglophone mass audience and adapted it accordingly.

The Germans and Central Europeans were on solid ground. Thinking of Wanda Gag's version of Cinderella - the girl who rose from the ashes and worked so hard.

Cinderella was probably one of the first literary folk/fairy tales I connected with.

Like a lot of people, there would be story tapes that had the story on both sides from the Walt Disney Company.

When I became ill in September 1989 a grandmother supplied me with a Disney record player. This took up the first week of the holidays - four days as I recall. I do not remember using it very much, and it was at least two years since I had used a real record player.

And it was well into the 2000s - some eleven - twelve years - later, that I was to access and share one.

Psychologues - they are well in their rights to ask about people's musical preferences and patterns. Audiologues also. After all there is a thriving industry for audiophiles which has catered to their needs and desires for many decades - and it all came from the world of audio engineering.

Carly Fleischmann wrote a consumer review about a really good audio device. She knows this stuff - because in 2009 she told the world about audio filtering. This is a feature which plays prominently into her communication and reception.

And I will admit I love the way she one-upped Stephen Hawking!

There is a 94-year-old English folklorist - Iona Opie - who died this 23 October.

I learnt about Ms Opie in the 1990s. And she was discovering stuff at Bod Library until the very end and making this enormous collection of childrens' literature.

Thinking about my real first tape - the Marshall Cavendish part work of Twigwood. I joined a Yahoo Group about the partworks - and it was a really good Christmas tape. I've tried to identify it to the mid-late 1980s.

I also got to know the characters through a big storybook which had the Large family bears on it by Jill Murphy.

Here is the technology Fleischmann is talking about:

https://www.facebook.com/carlysvoice/posts/10155122887207749 :prose it is called.

https://www.facebook.com/carlysvoice/photos/a.80816742748.80194.68996682748/10155108481352749/?type=3 - Fleischmann reflects on her experiences with Oral Motor Apraxia

https://www.facebook.com/carlysvoice/posts/10155094520502749 - Real Raw Footage of Stephen Hawking - even Arthur Fleischmann was impressed - and chagrined - when Carly one-upped Hawking.

And in very recent times I discovered The Specials and their Xtra Special premium website which is good for things like If I knew then what I know now ... no, that's the Elton John song which was on Goodbye England's Rose.

[and in December 1997 it was a powerful one for me that week before Christmas].

Really loving the closed captions en francaise and probably several other tongues/langues. In May 2017 I tried some subbing and captioneering for children's nursery rhyme videos especially the Finger Family.

Elton John You can make history [young again] from 1996. This is really the first time I have seen Dobkin's directions in the music video styling business. It is like in orinthology - heard only - and that is such a very partial way.

And how the Video Cassette Recorder taught me so many languages in December 1990. Yes - it was the standard EU set - Italiano; castellano; deutsch; Nederlander as well as English and French. And because it was AKAI - I might have expected to see some Japanese.

Timeshifting in the 1990s was very much scheduling and it was so linear. And yet non-linear editing was to be discovered. Which is more true to the way we tell stories?

Of course there is never ever only one way to tell a story.

I am thinking of my first ever musical which I understood was a musical - The sound of music. I remember sitting near the TV on my sheepskin rug and seeing the children in their curtain clothes.

And then in 1996 I had it recorded for me. It is a good thing for students to do - or to have their family do.

We kept a video book which was to be well-organised.

In 2004 I dropped the VCR for a DVD player - seven years too late in my opinion. My first DVD was probably My big fat Greek wedding.

When it came to Sound of Music the Maria-as-nun storyline resonated with me and the whole How do you solve a problem like Maria opener which the nuns did. There was also some nice intertextuality with Sister Act 1 and 2.

One thing I will always remember from mid-1996 is:

If you want to do something
if you want to go somewhere
you have to wake up and pay attention.

And now I am thinking of Stranger things 2 where Eleven had her Robin Humphries moment. It was sort of dealt with in Beyond Stranger Things.

Another source of musical exposures which weren't TV or movies would be advertisements and catalogues. And probably reviews, when I learnt to read them.

[You can tell that I've not forgiven Rupert Murdoch for not making his papers accessible; especially the quality ones like The times and The financial times. 2012? No - 1985-92. Thanks for seven years of functional illiteracy, Dirty Digger and his mates and backers. Though tout court, when you have the equipment and milieu you have...]

And because you never forget your first Elton John - Sacrifice.

It's a human sign when things go wrong...

Kerima Cevik of THE AUTISM WARS writes THE RIPPLE EFFECT.

James Harris writes for the Journal of American Academy of Child and Adolescent Psychology about NEUROTRIBES - 1943 and all that. Kanner; Asperger; Bettelheim; Frankl; Irena S and all those cool people - and by Irena S I mean the woman who made these theories about schizophrenia; schizoaffective; schizotypal personality; schizoid personality.

Meriah Hudson writes about self-contained classrooms and applied behavioural analysis and how developmentally appropriate practice is working out for Moxie. So far - ah, her therapists are human. Blue Lake life.

I especially appreciate the link to Unbound Books.

And thinking about that Camelot musical with the release of the John Fitzgerald Kennedy files.

I had seen a really awesome 50th anniversary documentary which looked at the gun shots. Paddock and his ideas...

What Silberman does not understand is that Kanner was not blaming the parents for causing autism; he was describing their behavior. Kanner and Asperger agreed that a parent whose child had autistic features shared the same underlying genetic background. Surprisingly, Silberman does not hold Asperger to account for his descriptions of parents. For example in his description of Fritz, his first patient, Asperger wrote, “The mother herself was similar to the boy … in the way she moved and spoke, indeed in her whole demeanor, she seemed strange and rather a loner.”25(p41)
By 1948 Kanner had seen 50 children with autism.37 In a presentation to medical professionals about nosology that year, Kanner referred to the innateness of autism (lack of responsiveness and failure to initiate social contact from early life) and to the rearing environment that is contributory to outcome (positive or negative) but not causative of autism. He used his frequently misinterpreted emotional refrigerator metaphor (described later in this essay) in reference to some parents’ own upbringing in describing their emotional distancing from their children. Despite media reports about this presentation, Kanner maintained his views on innateness. Kanner did not blame the parents for causing autism at that time. Later he recognized that the characteristics of many of the parents he described were a forme fruste of the full syndrome.
Thus, in 1956, Kanner and Eisenberg proposed that “if one considers the personalities of the parents who have been described as successfully autistic the possibility suggests itself that they may represent milder manifestations and that the children show the full emergence of the latent structure.”38(p560-561) Kanner’s prescient recognition of what we now refer to as the “broader autism phenotype”39 in a subset of parents set the stage for later studies investigating the broader autism phenotype using behavioral measures and psychological tests,40 language evaluation,41 and, more recently, brain imaging42 and family genetic studies.43,44 These studies demonstrate the extent to which autism is a genetic disorder.
In the 1960s, Kanner expressed concern about psychiatrists and psychologists blaming mothers for causing autism when he wrote, “There was a tendency in this country to view [autism] as a developmental anomaly ascribed exclusively to maternal emotional determinants.”45(p413) He clearly rejected that viewpoint. The confusion about Kanner blaming the parent might have arisen because Kanner and Eisenberg38 considered autism to be a psychobiological disorder in which both genetic makeup and life experiences matter and interact. They wrote, “It is difficult to escape the conclusion that the emotional configuration in the home plays a dynamic role” in the ongoing development of children with autism. They continued, “But it seems to us equally clear that this factor, while important in the development of the syndrome, is not sufficient in itself to result in its appearance … the children are different from the beginning” of life.38(p563) Autism is innate, but the rearing environment matters, and child-rearing practices are important. Beginning in 1955, Kanner began working closely with Jean Simmons in Baltimore to provide an optimal treatment environment for children with autism as described in The Hidden Child: The Linwood Method for Reaching the Autistic Child.46
In his annual orientation lecture for new child psychiatry trainees, Kanner described the optimal attitudes for child rearing (Dr. Kanner's Orientation Lecture, unpublished manuscript, Johns Hopkins University). Taking the child’s perspective, he pointed out that every child needed affection (they like me), acceptance (they want me), and approval (they think I am OK). These attitudes ideally should exist in each home, making it a “triple AAA” home. However, he said, some child-rearing attitudes were detrimental. He said that the attitude of parental overprotection (modern helicopter parents) was for the child like being raised in an emotional oven, and he said that a home where parents were perfectionists who expressed little emotional warmth was, for the child, like being raised in an emotional refrigerator. This formulation was not intended to be a statement about parents of children with autism but rather a general statement about issues in child development; however, he did refer to it when discussing parents with autistic children in his 1948 lecture. However, he emphasized that parents of children with autism were not rejecting, mistreating, or abusing their children; they were perplexed by them. Eisenberg and Kanner recognized that although the emotional configuration of the home mattered in autism, “it is not sufficient in itself to result in its appearance.”38(p563) However, Kanner could not ignore that parents with autistic traits themselves needed additional help, because child-rearing practices were important: the child with autism needed a triple AAA home environment, too. Kanner’s recognition that the rearing environment matters, despite the innateness of the disorder, is essential to our current interventions. Early positive invention makes a difference in outcome and is the focus of current treatment trials.
In summary, that Kanner blamed the parents for causing autism is a misconception that arose in the eugenics era when children with genetic disorders were being killed in Nazi Germany as life unworthy of life. In that era, reference to genetic etiologies was not welcome. The field of genetics was in its infancy, and psychoanalytic theories of the psychosocial causes of severe psychiatric disorders were ascendant. Medical research showed little interest in inborn psychiatric disorders.
The anti-genetic zeitgeist of those times was that environmental factors matter most. This led to the use of terms such as “schizophrenogenic mother,”47 and with media attention the term “refrigerator mother” came into use. However, parents of children with autism were not rejecting their children. They were coming to Kanner for help. [Harris 2016]

And Grunya Sukhareva - did she call autism pathological avoidance sixty years before Newson? Hold the presses, please! [1925 for Sukhareva; 1980 for Newsom - though there was that paper in the later 1980s or 1990]. 1891-1981 are her dates.

There seem to be three good WorldCat books of hers. Now the only Polish psychologist I tried to read is Kazimierz Dabrowski of Positive Disintegration and over-excitabilities fame. Bill Tillier is good at disseminating him. And Janusz Korczak of course - King Matt the First they tried to market as a Harry Potter-type in recent years [2013? 2014? maybe].

Unbound Books from Lana Thomas - it is a Neurodiversity Library - and these are perspective pages on Applied Behavioural Analysis

Institute of Ideas with the Sp!ked people happened on the 28th-30th October, and the Sp!ked Review of Books was all about the Reformation 500 years ago. That is Martin Luther and his 95 theses - 1507.

Amazon wishlist of Unbound Books the autism acceptance library

And there was a really cool video from WORLDbytes about the hundred years since the Russian Revolution.

Battle of Ideas 2017 events and more

Living Freedom is a residential for 18-25 year olds




And Perrault. Is. Still. So. Hard.

That reminds me of the aspie182 video series Exceptionally bad portrayals of the autistic. One of them is about Exorcist the second; the other is about Mozart and the whale [who reminded me of #actuallyautisticadult Britany - note the one T - Actually autistic adult - Britany's blog space on Wordpress] and the last is about Rain Man.

Golan-Globus!

And there was a lovely one called The Magic Riddle by the late Yoram Gross.

Sunday, October 29, 2017

#31for21: Penny Becker - "My life is filled with caring, loving people and joyful happiness"

Introducing Penny Becker; the daughter of Amy Julia Becker and sister of William and Marilee. She is 11 years old at the time of this interview which is a wide-ranging one. AJ Becker notes that the syntax and thoughts are Penny's own - one of the ethical concerns of interviewing someone is getting their voice and choice right.

What I noticed immediately is that Penny enjoyed Little Women which Becker is reading to her and her sister Marilee. She thinks it is full of mystery.

Hannah Kim recommended on Twitter the Little Fox level 7 version of Little Women and I ended up listening and looking at chapter 11.

During #AutisticHistoryMonth too in November; oral history interviews are strongly encouraged. So are transcripts.

The version Kim uses is a strongly Christian and academic version. Indeed lots of homeschoolers and home educators have read Little Women.

I was exposed to that text in a very worldly way in January 1995 - due to the film being released with Winona Ryder as Jo and Kirsten Dunst as Amy.


And one of my first memories of Little Women as a generic text was when I was reading about charities which sell people's hair - mentioned some important literary personalities like Jo March and her long brown hair.


What are your favorite activities inside and out of school?
My favorite activity in school is a lot of things. My favorite activity outside of school is Ballet.
Can you tell me about your family?
My family is pretty cool except when they are all grumpy and mean. My mom Amy Julia, my dad Peter, my sister Marilee, my brother William. 
Can you tell me about your friends?
I have a lot of friends. I will name two. 1 of them is named Lynzee the other is named Aurora.How do you feel about having Down syndrome?
I feel cool with it actually and when i have it it is kind of hard sometimes. When I say I’m cool with it it’s because it’s easy. When I say it is hard sometimes because there are a lot of challenges you have to face. The first example of a challenge is putting a back brace on because I have scoliosis.
What are you reading right now? Can you tell me a little bit about them and why you like them?
I like Little Women because it has great mysteries and i think other people with down syndrome will like it.

What are some of your favorite foods, movies, and musicians?
My favorite food is cheeseburgers and pesto. My favorite movies are Beauty and the Beast, the new Annie, and Father of the Bride parts one and two. My favorite musicians are Taylor Swift and KidsBop.
What do you want to be when you grow up?
A fourth grade teacher because I can teach spelling and making up your own rules on group projects.
What do you believe about God?
I believe God is nice and caring because I can feel Him in my heart.
Do you have other challenges?
Everybody has challenges.
What are your favorite things about you?
That I can do gymnastics and I can watch shows or videos on the weekends. The way I am a sister that I like is that I’m nice, caring, and I wear beautiful clothes. I can do splits easily.

What do you do when you’re afraid?
I got over my fear of crutches because I have seen a lot of people on crutches. I prayed and I had some breathing exercises and that helped.

Is there anything you would want someone with a new baby with Down syndrome to know?
That Down syndrome is not scary but when the baby is first born it may be scary to the parents. Don’t be scared because your child’s life could be easier than expected. My life is filled with caring, loving people and joyful happiness.  
[Selected from Missing out on beautiful e book by Becker P. and Becker A. J. 2017] 

Saturday, October 28, 2017

#31for21: "Friends never lie"; Doll 132 and Victoria; Dwonnik z Notre Dame

For my "one free link" in the SATURDAY PAPER I chose Clem Bastow's ME TOO MYSELF AND I. It is about how fourth-wave feminists construct; deconstruct and reconstruct traumatic lived experiences.

Absolution seeking behaviour is everywhere. When you practise it too often it can take away the reasons; the ability; the will; the impression. Doing good things and feeling good things can often bring cognitive dissonance - this is a big problem in humanistic/human services fields. From "the presenter you called inspirational", and other people call Rabbi Ruti Regan who writes SOCIAL SKILLS FOR AUTONOMOUS PEOPLE and has done since 2012. I've been reading and recommending it nearly all that time. No absolution for that - when you start seeking the Absolute, it puts you out of touch with relativity and relationality. Yes, it does.


Because when I watched Hunchback of Notre Dame in 1996; I came to it as a young woman who wrote the lines of Victor Hugo and read Disney Adventures about computer-generated imagery and was awed at the power it took to make the crowd scenes - and maybe saw some wisdom.

[James Surowiecki - 2004 - The wisdom of crowds - which was really powerful in the age of Wikipedia and maybe its height/zenith].

The song which touched me most was Esmeralda in the Church - Frollo's Church - God help the outcasts. And of course: "If God doesn't help the outcasts - who does?"

Outcastery was powerfully explored in the second season of Stranger things which I have watched eight episodes thus far - I watched the third to the eighth episodes. There were good quotes in the third episode which would probably make awesome GIFs.

And the merch, people! Someone had kindly bought me some of the Notre Dame characters like the goat and like Quasi and Esmeralda and Phoebus and Frollo - which are good to use in imaginative scenes; in the bath [laminated scope and sequence cards would be good too - if you find yourself reflecting and learning in the bath or in a shower] or as displays.

If Alexandrina Victoria could imbue a doll with manifest destiny and imperial ambition when she was 13 and realised she would be Queen after she looked at her family tree with her governess - this was 1827 - and if in the 21st century there is the end of International Games Week where people actually dress up and enact characterisations and characterology ... then our puny imaginations have to measure up.

One way to develop an imagination is through shared experience - like shared book experience.

Another way to develop - and protect - an imagination - is to shelter it.

When overwhelming experience becomes real it is encoded through imagination and memory is what happens when you decode it.

Hunchback of Notre Dame was probably one of the last Disney Renaissance movies I enjoyed.

Remembering Margery Fisher, which has been an Aesop of mine for eighteen years:

A children's story must grow out of some memory and contact with childhood.

That was in Intent upon reading - I met it in Criticism of girls' school stories 1949-1994 by Ju Gosling.

Thinking of A little princess and the scene with Sara and her Last Doll Emily. And the moment in which she realises the doll is sawdust. And the way she makes the doll live for Evangeline and Lottie and everyone else - I do believe there is a massive tea party.

And how much I absolutely would have loved to see The hunchback of Notre Dame in Rroma. I suppose you can't for the same reason you don't watch The king and I in Thailand. My love and passion for Thailand did quickly mature - it is a nation with whom I interface through food and the protocols of monarchy.

The Saturday Paper and/or the Good Weekend had a good Rroma story. And in 2009? 2010? I made a Rroma folder full of Wikipedia articles.

So - Drina chooses her own regnal name - Victoria. She is of good German stock - as we see through the Duchess. Her father died very early; her uncle was the King of Great Britain and Northern Ireland. And she wants one of the advisors to go back to Hanover.

[Hanover Free City - and I remember the whole Hansa union].

The governess - Letchen - what a lady.

And I really enjoyed the servants and the downstairs people.

You do not put tallow candles in Buckingham Palace and expect it not to burn, especially during a court dance where you put frankly half of Europe together.

The chemistry between Victoria and the Russian. [Thinking of Anastasia Krupnik and how she learnt about the Romanovs from her dad Myron - he had been my favourite literary Jew since I first encountered him - the power of a literature and poetry lecture from this man made me change my mind in February 1993 that Wordsworth was my favourite famous person from Albert Einstein - I had lots of imaginative games where I interacted with Andrea Einstein who was from the future. Being what you see; see what you can be. Those games took place around September - October 1992 where I also watched a video about motorsport and a young boy who went to the Monaco Grand Prix and grew up around that culture. And, yes, we now have electric cars and soapbox derbies which I loved when I saw them in The rascals and other engineering efforts].

And the moments which really touched me in my Stranger things 2 binge?

[Yes, a binge. When I am on the computer I do not really concentrate on streaming or on-demand TV - unless it is a 2 or 3 hour music video - like the one about Soul which ran for nearly 3 hours].

I am thinking of Bob the Brain and how he knows how to program and how he designed the Audio Visual programme for the Hawkins students.

A lot goes on in that room.

And I remembered how I know BASIC.

The test of a language - do you talk to yourself in it?

And if computers could talk imagine the things they say ... I made a Kid Pix Companion presentation in my free time based on this idea with a Macintosh microphone. You can make a presentation into its own app. And I have thought - instead of GIFs [no, you do not say them Jeff/Geoff - even if you are thinking of a photographer] make slides like the YouTubers do with their lyrics.

I know the difference between high level and low level computer languages.

Low level [assembly] represents the way computers think.

High level computer languages represent the way humans think for human results.

Pythagoras was right - Man is the measure of all things.

And one way people measure things would be through maps.

In Stranger things 2 we learn that the map is not the territory.

Hardest geographical lesson I ever learnt.

In this case: the territory is Hawkins, and Bob goes through the lakes to find people who have been in the Upside Down.

10 ARRAY 0_0_0_0
20 PRINT ARRAY
30 RUN
40 END

And then Bob went through the database. 0s and 1s - you switch things on and off. Binary code and assembly language.

And I know that there are these gates that you use to put data and information through. Like if you wanted to open or close a door to a presence.

28 October 1984 was a heady time!

We see "Mad Max" at the arcade. She plays games like Centipede; Dug Dug [which later on is an important episode - you need to know Dug Dug to navigate the Upside Down] and one other.

Sense and Sensibility and then arcade games and lots of tickets and small things like stars. I did spend a lot of time in the 1990s in places like Timezone especially playing Shuffleboard and Skeet and skill testers and even driving games.

We learn about the party and the roles people have in it. Like El is a mage. When I would play MacMoria I would try to be a warrior; mage; priest or a paladin depending on the race and class I had chosen.

And I love how Max said she was a zoomer and the Hawkins Middle School gym is full of her skating tricks.

We see even more of Dustin and Lucas - and great scenes with Lucas's family and his little sister.

In another world I might have written an undistinguished thesis about step-siblings in middle-grade literature and I might have used Tracy and Ronald in Does third grade last forever? [For about 50% of people it might last 40-50 years!]

And Dustin and Lucas - there would be a lot of dissembling and disassembling and dissing between them.

Will and Mike - they see a lot of "shit got real" stuff, and indeed was Always Already Real in the Lacanian sense. Or is that another Theory Theorist?

And just the idea of mutations and evolution played out in this way.

That pub-rock mullet stepbrother of Max's? The father when he talks about respect and responsibility - do you realise your ideas could be collated with a Coloradan dog grooomer through the sands of history in the Zen garden of harmful and unsubstantiated practises in lifespan development? You just missed out on being fun to be around.

The lost sister I do not think I will ever forget. Love Kali's team of outcasts and all their personalities. And making Axel dance. Axel F, eh? He was around at that time.

And all the Halloween stuff and the Reagan/Bush election - someone was campaigning for Ferraro and Mondale and we see inside their house.

Cinematography and production design was tops again. I try to take note of the show writers like Jessie Lopez who I think are doing a good job.

Conspiracy theories were big this season especially when Nancy and Jonathan visited Murray.

And wodka? The only real use I had found for it was for sore muscles and/or a bludgeoning tool. And it is also good for getting governesses drunk - and dead. Then you spin it out for nine books / nine terms.

Fortunately Victoria didn't kill off her governess - though she might have wanted to at times.

She certainly makes quick work of her mum and Conroy. John Conroy.

Australians know Conroy as this arch-right man who wants to shut down the Internet or at least bottleneck it.

And when the Senate papers went to 144 as opposed to 12 as they did in 2016 - first big change of that sort since 1984 and the first year of Robert James Lee Hawke - people took delight in putting Conroy last.

Celine Dion - and the last shall be the first - 19 November 1996 video of Les derniers seront les premiers which was on D'eux.

Anyway John Conroy has put the Duchess under his thumb. And people can make the appropriate analogy to Australian politics in the last 10 years.

And Victoria has seen it all - the corrosive influence; the loss of will; the corruption.

She did a big thing when she said she would speak to everyone alone.

Lord Melbourne does help as private secretary. He has a secret sorrow about a family member.

I was really excited when I discovered about Lady Caroline Byron - and Charles and Mary Lamb.

Lots of literary kids - and people with literary pretensions - read the Lambs' Child's tale of Shakespeare. Helen Keller and Macbeth - that text made her tremble.

I think Shakespeare made it very terrible so that people could see how terrible it is to do wrong.

Helen Keller had said the quote above when she was about 10 or 11 and "had a childlike aversion to tragedies".

And that was probably the standards of the Progressive Age in which Keller; Sullivan and Macy lived in.

No, this is the adult aversion adults want children to have. Don't go seeking it out; and when and if tragedy personally finds you ...

Some compare and contrast now - two parties.

In Stranger things 2 Nancy and Jonathan go to Tina's party. The punch is appropriately Halloweeny.

In Victoria the new Queen is accused of not being able to hold her champagne when she asks for an investigation into Conroy - and into Emma Hastings, whom the governess thinks is pregnant and/or with child.

Emma Hastings turns out to be weak and ill.

Nancy and Jonathan - Nancy - under the influence - gives this nihilist rant about how "everything is bullshit". Or at least deeply cynical. And that she "never loved" Jonathan.

This comes into play later on when they meet Murray and delve into Hawkins. A real stick it to the man / the system moment.

Queen Victoria has plenty of these moments too. Like when she goes to the Trooping the Colour and turns her back on the regiments - not on purpose/intentionally.

And she is a strikingly good equestrian, or her actress [Jenna Coleman] made her look that way. And Lord Melbourne is not too uncomfortable on a horse either and they ride through the autumn leaves on this path.

The gardening in this - landscape architecture and design - is so impressive. Very English country house style. And again - the royals set the tone, though it is really the courtiers and the workers who do this.

Emma Hastings was a very good courtier and daughter of courtiers for about five generations which brings us to the previous 100 years [1732 - 1832]. Very nimmy-pimmy and pretty; she does speak her mind though.

The moment when Victoria apologises to her and then tells the Duchess about the apology. That is a delicious moment of ambiguity.

And there was a Crowning Moment of Principle. This may or may not be a legitimate TV Trope. Along with Crowning Moment of Awesome and Crowning Moment of Heartbreak and Crowning Moment of Weird.

Victoria [PBS/ITV] season 1 soundtrack playlist

The Young Victoria soundtrack playlist

And there might be a season 2 playlist as well.

It was "I am tired of principles" after the guild-college-woman was working on her hair and taking a little bit for herself - and justifying it for the Crown like they all seemed to do - at least the servants who spoke.

Chandlers / candeliers - they are not exactly an upstanding lot.

And they probably wouldn't have been in Notre Dame either - which was written precisely in Queen Victoria's time. I wonder if she liked to read Victor Hugo and what German authors she and her governess would discuss in their spare/free time.

People like Goethe and Schiller maybe? And she might have liked fun books too.

The coronation part was pretty good. I hope they were able to build a throne which fit.

And when Conroy and the Duchess laughed about her being short, weak and foolish - that really did cut through. Hard.

And the part where Hastings made the List of people not more or less than average height - which is something like 160-165 centimetres back then in the United Kingdom.

[Maman was considered way too tall for ballet. I had a small squat body which was good for getting into things and getting out of things and getting around and through things - hurdles; steeplechase; obstacle courses - like Ninja Warrior - and running around like the Tasmanian Devil and Speedy Gonzales].

Just - the list. Did you not look at any other criteria - like compatibility and companionability?

I mean - even in Rebecca the narrator acts as a lady's maid. And, yes, that was probably at least a hundred years later - probably closer to 50, if my sense of Daphne du Maurier history is right.

And Queen Victoria could have used some of that Friends never lie.

Now I am processing the consequences of the mind slayer. Made a comparison to Buffy really quickly:

"If Buffy is the Vampire Slayer; then who or what is this mind slayer?"

And then found out through that Dungeons and Dragons manual. 4th or 5th edition? The 2nd edition was really famous.

And Russians or aliens? Ah, not so simple.

When you think of the alienists who might have persecuted and prosecuted Queen Victoria - they called her "unstable" ...

There might have been an Elizabeth II 120 years earlier than the one the UK did get. And, yes, the first Elizabeth was a great queen.

There are at least two people who know lots more about British royalty than I do. I printed out a soc.culture.royalty list of succession around the time of William and Kate - and what a big trip they had taken through Germany and Poland with the children within these last three months.

Gdansk and technology. Krakow and Osciewim. And Germany and great-great-great-grandmothers.

And now you know hunchback is dwonnik po polsku.


Friday, October 27, 2017

#31for21: A 47-chromosome masterclass in valuing yourself and changing your world; barrier-free ways to access enthusiastic consent

I love posts which help me to be the person or people my 15-year-old self needed and posts which help me be the person or people current 15-19-year-olds need and want in their lives. This open letter from Amy Silverman - Phoenix journalist - made a connection that my heart can't even believe now. Again, the information and emotion in this open letter is something I would have valued from the time I was 10

Don't judge the people with Down Syndrome
Sophie Silverman 

The person I needed when I was fifteen would have told me No is a complete sentence - yes, even in academic writing or formal writing.

This alone would have been enlightening and empowering to this English language learner.

The thing about life is that you learn and that you continue to learn. And if learning is one of your values; you continue to seek out opportunities and advocate for yourself in these opportunities.

One of the biggest opportunities we have in our social and sexual and political lives are the ones which enthusiastic consent brings us.

Because Yes is a complete sentence too.

What do I mean by a 47-chromosome masterclass in valuing yourself and changing your world?

We make big claims on high stakes here at Halfway at Rysy Peak.

Though I personally don't often make big claims on my own account.

I am focusing on the fifth point in Silverman's Open Letter: You can say no to a person with Down syndrome.

And I experienced that as a "Yes - but" ...

Like - Yes, you can say no to a person with Down Syndrome, but there's a cost involved.

And people with Trisomy 21 have already experienced or are soon to experience some of the biggest no's in our world.

How dare I invalidate their existence further than I already have done? How dare I violate their essence?

In the USA people value life; liberty and the pursuit of happiness.

In France, people are much more into liberte, egalite and fraternite.

Silverman touched on fraternite when she talked about "as with any student or friend". And egalite.

I have a problem with egalite right there. And I'm going to work through this with lots of questions.

How do you feel about saying no to people who are small; weak and vulnerable?

What do you think; how do you feel; how do you act when it comes to saying no to children?

What do you think; how do you feel; how do you act when it comes to saying no to animals?

A lot of us have a lot of cognitive and emotional barriers to saying no.

And some of this no-saying is violence. Lateral violence.

So next few questions:

When was the first time/the last time you said no to someone with cerebral palsy?

With epilepsy?

With autism?

With an intellectual disability which is not Trisomy 21?

And I know a lot of people have problems saying no to people of their own karyotype!

When I was thirteen I struggled a lot with denial and withdrawal especially of the arbitrary type.

Since we began to relate to people and people began to relate to us, yes and no have become very personal and very political words.

They're not only words.

Think about the ways you affect and effect the world every day.

What if you had fewer or no ways to do this?

Every way the world is affected and effected is valuable and to be respected. This is very much a core value of mine and one of the ways that I act in the world.

And when we think of our relationships with the world and with consent -

this is a twiggly mess.

There are so many barriers involved!

Colin Barnes wrote about these barriers in a book called The cabbage syndrome in 1990.

I think again of choice and of acceptance and rejection.

A lot of teenage and young adult identity formation is built and broken in rejection. Sometimes it never comes back again or not in the same way.

I wish a lot more of it was built in acceptance.

Acceptance itself can be passive or active - or even aggressive.

Konrad Lorenz wrote a good book called On aggression which will challenge any mid-adolescent. I didn't read it until I was 30.

Here are some of my ways to experience barrier-free access to enthusiastic consent:

I make sure my past; present and future self are aligned with each other and the world.

I do not get up in pain; fear or fatigue.

I set myself up for success.

I reward myself for success.

I flow through my life.

I affirm others as I affirm myself and I would like to be affirmed/they would like to be affirmed.

Would love to talk about the whole irresistible impulse phenomenon which is recognised in psychology; in sociology and in law.

We are much more likely to consent [or at least to assent] when we feel we have a choice or we actually have a choice.

I thought and still think a lot about determinism and free will, which was reinforced by Religious Instruction every Monday. Perhaps you have a Philosophy or Ethics class.

And it is important to be mindful of developmental and chronological expectations about decisions and consent - and the gap that we may often have.

People with Down syndrome aren't the only ones to be affected by this gap - nor to have negative responses which may make even further barriers.

Think about it: What do you think makes a choice your choice? When was the first time / the last time your 'no' was your 'no'?

Education is supposed to be a place which is relatively free of the hard sell - at least it was in the 1990s up until the early 2000s.

Self-education can be particularly vulnerable to the lack of sell.

And while we're talking about selling and buying?

The Swedish Academy Economics Prize was about nudge. Behavioural economics.

And I would not be doing my job on Halfway up Rysy Peak if I did not talk about tolerances and affordances.

Teenagers and young adults can tap into this energy that they do not fully understand, nor do younger people and adults.

Do your "yes"ses and "no"s keep you in role or out of role?

Sadly, in some societies, student and friend are not particularly valued or valuable roles.

I was often acting from a basis of being undervalued or devalued as a student or a friend. Perhaps you recognise this.

And being overvalued or hypervalued - that is bad too.

You may like it for a little while or even for a long time.

When we give our yesses and our nos based on what we can tolerate and/or what we can afford - these are very conditional.

And, yes, studentship and friendship are deeply conditional - though they aspire to being unconditional.

Conditionality is another pressure. You know when you live inside conditions and when you live outside - conditions do not have to contain us.

I have a cognitive block when it comes to containing objects. This is a direct result of traumatic stress sustained in the mid-1990s.

Tolerances and affordances can be contained. Can be. What happens when they can't?

It is so hard for teenagers and young adults to find their right value in the world.

So what would this wrongly valued teenager or young adult see when they see someone with Down syndrome?

Someone who demands their role and their value. You may feel a frisson of envy, or a sense that it would be fearful and terrible to stand in their way.

Yes - a lot of responses come out of fear and of terror.

In the USA you have had a lot of consent violations. You have grown through and around and with them.

And thank you Brian Stotko for that foundation survey.

I am remembering something which really moved me in Helen Keller's Teacher when I first read it when I was 11-ish in my grandparents' house.

I wish I had someone who really cared, Annie Sullivan had said. It's more effective in the memoir she wrote with NBH - Brady Henney.

Enthusiastic consent is one way you can show you really care about someone.

And it's always good to expand your circle of moral and ethical concern.

Sometimes it can be very narrow or hyperfocused - like when you have a glasses prescription or another sensory or cognitive prosthesis.

It would be good to talk about prosthesis and enhancement later on. We still have three days.




You might learn a lot from the 2011 survey that Stotko and colleagues did about self-perception.

How did this one group of people come to like and value themselves so much?

Well - it was partly because of you and me.

Enthusiastic consent is about helping people to value themselves even more than they did before. Can this ever be coercive, as a lot of self-esteem and self-concept development programmes tend to be?

I will admit that I have a narrative about myself which makes me chronically and terminally irresponsible. My own self-talk says I will die of irresponsibility.

And the various ways this manifests - think about the ideas you have developed about responsibility and caring and how you act upon them.

Back in the 1970s and 1980s - we had all this received wisdom about Down syndrome - without having met or regularly interacted with someone with Down syndrome.

And this received wisdom - and inherited guilt - is another struggle; another barrier.

As Silverman has said, or a friend of Silverman said, people want to be seen. Think of all the ways you see and don't see - your own blind spots and those you inherited and evolved and developed.

Johari and Nohari windows are good for this. My Nohari window says simple and arrogant.

And the Ukraine situation - this is what Sofia Sanchez left. All the people who stayed - they're in al-Jazeera - which some people call the "Arabic Fox" behind my back. Think of the al-Jazeera people who fought for free journalism in the Middle East.

And I think of Dumbledore in Harry Potter and how he developed his attitudes and values towards power and responsibility. Ten years after I read Red Hen about the Dumbledore family - I recognise that Dumbledore had used a form of avoidant coping.


For me, avoidant coping is when my yes is not really my yes and my no is not really my no.

Avoidant coping is a big cognitive load. Load is another way of saying affordance.

And so many people use their intellect or their other big qualities.

Listening to the Kate Grant story. She is a fashion model. Vive la BBC!

C'est magnifique! One thing I love about Ireland and Northern Ireland is how they value their population. Ireland may just be the best place to have Trisomy 21 in the whole wide world.

How and why does enthusiastic consent shape you into the person you need and want to be? The person with Down syndrome deserves no less.

Identify your barriers and your access opportunities. Advocate through them accordingly.

And, yes, we feel grief and guilt for the denials and the withdrawals of the past, even the ones which arguably had and helped us grow.

Make sure your yes is your yes and your no is your no.

Work through the tolerances and affordances. Find your personal and professional nudges.

Value people you would not value or could not value in the past. Make sure your values are ever expanding - though not in an imperalist or colonialist way.

[what are we afraid of? That someone with Down Syndrome will become an imperalist or a colonialist? That is a power differential!?!?!]

Thursday, October 26, 2017

#31for21 Sofia Sanchez and Be You Tiful Love Sofia and Margaret o'Hair

Californian childrens' author O'Hair and eight-year-old Sofia Sanchez wrote a book together called Be You Tiful Love Sofia. The book is full of poetry in Sofia's voice and lots of illustrations. When I saw it a few days ago, I thought it was wonderful. Especially the part where she admitted I thought things lonely babies think while she was in an Ukrainian orphanage. The authors are based in California and Sanchez is an actress, model and student who has had several stage and screen opportunities.





I love taking pictures and I’m really good at listening, following direction and I’m super patient. I love people and making friends. I am blessed to have the life I live.
Sanchez about her life and what she is good at and what she loves


She has played Messenger in the Character Counts play and Gingerbread Girl in the Kindergarten play at her school. And the National Down Syndrome C has done The wizard of Oz - one of my favourite mythos since I was a small girl myself and discovering American literature.


Sofia has a big brother called Joaquin. They are the two Sanchezes who have Trisomy 21. There is a family picture and an activism/advocacy picture.



I love the whole self-esteem message involved in Be You Tiful. She sees that she is smart and capable and competent.

Someone else who is promoting the message of comptence is Daniel Smrowowski who is responsible for Special Chronicles Podcast.

In October 2017 the Special Chronicles Podcast covered the people of Born this way for the third season.

It's good to watch John and Joyce Tucker:


and Rachel and the senior Osterbaches:


And Peter FitzSimons is writing a new book about Burke and Wills and their explorations from Coopers' Creek to the Gulf of Carpentaria.

I thought AstroVisual did a good job of the subtitles.

And I spent a lot of time at Flame of hope by Snoopi.








Have you ever wanted to front flip in your wheelchair?







Fats Domino died after 85 years. He really brought New Orleans to the whole wide world.


I first became an intellectual property nerd after reading Piaf and finding how Edith and Simone tried to get copyright to their works from the musical version of the Academie Francaise. It was reinforced by an article in February 1994's Macworld which was about images and sounds and fair use. I learnt a  lot about a song called Alone again naturally.

What I found awesome about Behind Born this way would be the live hangouts and the live streaming which was done in early October.

Monday, October 23, 2017

#31for21 #themmlinky Les Horribles Cernettes and the Hardonic Concert / International Games Week

Hello everyone!

There are so many happenings. I intended to originally #rickroll you with my new green-shelled polarised sunglasses, and that song is indeed a good reminder of values:

Never gonna give you up
Never gonna desert you

especially when the roses are growing and the compost is fermenting.

I have been outdoors colouring in Tomislav Tomic's New York from the Echo company - especially the picture of the Statue of Liberty, studying about fish for Nicki Palin's The sea and reading Northanger Abbey by Jane Austen.

It is International Games Week. There have been lots of powerful interviews with wonderful women, and Genevieve Bell has had another illustration drawn for her about Tamworth and its pioneering electricity in a municipal area - in the 1890s!

And here is a good concert for an hour - the Cernettes - who until July 2017 sang as part of the Centre for Nuclear Research singing group.

One thing you may not know about the Cernettes - their band pic was responsible for the very first graphic which was distributed on the World Wide Web.

The Hardonic concert was really fantastic.

People commented on how the Cernettes had barely aged even though they've been in the public eye for some 25 years - since the founding of the World Wide Web, in fact.

This is a song I remember during the 30th anniversary of Black Monday and Black Tuesday [19 October and 20 October 1987].

And I remember it even more because I heard it a lot in September and October 1999 while I was in consavelence and rehabilitation.

This clip comes direct from Jefferson Starship VEVO. I will admit to confusing VEVO and VIMEO.

I'm so glad I found you
I'm not going to lose you
I'm going to stay with you
[...]
through the good times through the bad times
[...]
they say we're crazy what do they know
let the world around us just fall apart
we can make it if we're heart to heart

Live through this thing together
Stand strong forever
If this world went down without us
we'd still have each other

this is a free translation/transcription.

Hold you forever and ever and ever.

And because it's become a #mondaymotivation tradition, here is the obligatory Chess clip.

A little story about this clip/song I know him so well.

I only discovered this song in January 2001 after going to a well-known discount music store and finding Elaine Paige and her greatest hits. Other favourites of mine include Heart don't change my mind and Memory.

And I would play it a lot - probably one of the three.

No-one in your life is with you constantly
No-one is completely on your side.

And it's this constancy and completion which is really important.

And though I'd give the world to be with him
Still the gap between us is too wide.

Learnt about the man before I fell

I was ever so much younger then.

Isn't it madness.

And that line about he needs his fantasy and freedom was probably a guiding line.

And I may even remember writing the Strzelecki scenes [of The sorrows of young Wladek].

This is my writing space at that time: brown chair with extenders; stable table with folded pages; manuscript on the left; music at the back; or sometimes even at a desk.

Trying's not enough is that crucial second line.
It's time we stopped pretending / time to turn the page / all stories need an ending
Living our life in yesterday / I'm leaving / I'm leaving

Heart don't change my mind
Heart be strong this time.

The above lyric is by Diane Warren.

Something for International Games Week which brings the 1990s and the 21st century together.

The fractured but whole - new SOUTH PARK game

And I wish everyone good luck for examinations and scholarships and assessments and evaluations at this time and over the next weeks.

Ben Grubb went to Las Vegas to learn about consumer encryption and why it is important

And I learnt a hard lesson this last week too. And, yes, it was about encryption.

Also People have the power, Frederick and 1959 as in Wisdom was a teapot - good thing for me in March/April 2002 - and even now in 2017 I find wisdom in lemon myrtle and this Tielka company who make Fairtrade tea! -
The wheel is the song I sing when anyone asks me questions about Albania and Kosovo, and of course all the secessionist movements which are going on in Spain and Italy at the moment.

Arty Boy is the one I tried to remember on Love that Max when Seidman was writing about parties.

Somehow there's this David Bowie tribute/concert coming up in my circles. And there are 6 ways to experience Berlin. Talk about dreams deferred.

Here are two Jann Arden songs about dreams:

And two Joan Baez songs about travel:

And two Kim Wilde songs about the gap between past and future:

In between on the Singles Collection are Love Blonde; The Second Time; Rage to Love; You Keep Me Hanging On which was my first Nowels song. Other songs I have enjoyed - apart from the first four or five - would be Never trust a stranger; Love is a four letter word; In my life and the one which has

I tell ya
It's hell - ya.

Later on I came to enjoy Love in the natural way, European soul, and Everything We Know. I enjoyed them so much I had them on MIDI files.

View from a Bridge and You came are still my Kim Wilde favourites since I discovered them in mid-August - early September 1994.

And another way MIDI files manifest - I first discovered this in 1991 - was through chipmusic especially in Tetris which is the one game I enjoyed a lot which had music. And Golden Axe of course.

It is probably inevitable in #31for21 that we remember those who have died - and their contribution to industrial relations and arbitration.

This is what I remember Michael Ashford for - the strike is mentioned about 7 or 8 paragraphs in. 1960-2017 were his years. Written by his sister Aileen

Forgotten and Found: Kim Walker's memoir about herself; her work and her love - for her sister Lorraine; for her mum and dad; for her friend Faye and everyone she worked with inside and outside the intellectual disability and advocacy worlds she moved in until 2011

And I have just read You'll grow out of it by Jessi Klein.

Still reading Beatrix Potter - a life in nature; a book by John Grisham which is set among a scene of South American crime characteristic of the 1990s; another one by Meg and Tom Kenneally.