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!?!?!]

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