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Who’s in, who’s out? What’s real, normal or even desirable?

I’ve been drafting this post for over a month, it has been through so many editions as it could easily relate to so many struggles or news items. It is also a viewpoint quite far from the mainstream. And may well prove highly controversial. I’m not at all anti-science. I am fascinated by all that we are learning about our universe and the way it works.  All of which, I believe, shows us more intricately God’s ways of working. I am very concerned, however, about how we decide who or what is ‘normal’ and who or what is ‘aberrant’ in our society. It is taking us a very long time to recognise the fulness of humanity. We have come some way in recognising that the colour of our skin does not make us different species; we are on the road with the recognition that men and women are equally human, capable of thought, self determination and reflecting the image of God; we are beginning to recognise that love is a gift of God in whatever form and that abuse of this can exist in all manner of partnerships…

Last month, in the midst of political rhetoric so very reminiscent of the early National Socialist Party in Germany, this article, on an entirely different topic, came to my attention. It looks positive, scientific, a break-through but it makes me deeply  uneasy.

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Pregnant women with elevated levels of certain immune molecules in their blood are at increased risk of having a child with both autism and intellectual disability, according to a new study.

The supposition underlying this research and the tone of the article is that there is a perfectible human “norm” to which we should aspire and that science can help us weed out the aberrations.  A belief which finds its logical conclusion in the Eugenics, famously practised by the Nazis but sadly theorised by American minds.  (See Edwin Blacks: America, War against the Weak or Steve Silberman, Neurotribes, Chapter 3.)

As the ideas of Eugenics were welcomed warmly in Germany, a reduction of the burden on society of paying for the upkeep of the disabled was sought. In 1920, Ewald Meltzer, surveyed the fathers and male guardians of children in his care at the “Katherpnehof State Home for Non-Educable Feebleminded Children in Saxony” asking 3 variations of the question: Would you give your consent in every circumstance to a painless shortening of your child’s life, after an expert had determined him incurably imbecilic? (Neurotribes, Chapter 3, Section IV) 

As a parent of a child who in the 1920’s and 30’s would have been described as incurably imbecilic, despite the intelligence and humour I recognise in him, I feel quite sick even reading the question. Sadly, as this month’s killings in Japan have exposed, this kind of thinking is suppressed by the mores of society but does not disappear completely. At root is the basic human tendency to shape our identity by defining us and them. We are like this…, they aren’t. We can do this…., they can’t. We are the humans, created in God’s image, they are somehow less than, we must make decisions for them and about them.

In Vienna at the same time as Meltzer was asking his deeply disturbing question, Hans Asperger and the Heilpedagogich team were working with an entirely different model. Their approach assumed that every human being could flourish. In their clinic a “highly personal approach [was taken with the patients]… even the standards of “normal conduct on the ward seemed surprisingly open-ended. The criterion for classifying a behaviour as normal or abnormal was the challenges it created for the individual child, not whether it strayed from an idealised template of psychological health.’ Fundamentally there appears to be no special interest in the differences between normal and abnormal’, Michals wrote, ‘as it is felt that theoretically this is unclear and practically it is of no great importance.'” (Neurotribes, Chapter 3, Section I). All that mattered was whether a behaviour helped or hindered the flourishing of the individual.

What kind of world would we live in if we accepted that all life is wonderfully created and precious in the sight of God. That no life is worthless,  a mistake or a burden to wider humanity. That each life is a gift which will draw particular communities of people together in enabling its flourishing. It’s the kind of world I’ve witnessed emerging in L’Arche and Camphill communities, in the midst of special needs schools and at Couthie House, where my one of my sons is now resident. What would science be discovering if research and investment budgets were directed towards enabling people to live the fullest possible life rather than preventing “abnormalities”.

We have begun to recognise that people with physical differences can have amazingly full lives and can sometimes outperform those with typically functioning human bodies. We recognise the amazing contributions of Stephen Hawking to the field of Quantum Physics. We could miss so much joy, so much delight, so many achievements, so many chances to be humbled, to be drawn into communities of compassion because we’re too busy trying to make everybody the same.

I don’t believe we are, or were ever meant to be,
but that we are called to love one another in all our differences.

 

 

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Family visiting…

In the month that I haven’t posted, I’ve revised another post 23 times. I hope eventually I’ll work out how to write and post it, but it’s not ready yet. I have also been on holiday back to my hometown, visiting family, friends and my Father-in-law in hospital.
Here are some of the moments I will cherish.

Swadlincote.

As Mum knocks on the door, the familiar anxiety gnaws at my stomach. Is Albert going to get out? Albert’s been dead a long time now, but that dog used to tinge each visit to Grandad’s with fear. It seems odd Grandad not having a dog.

I wonder whether he’ll recognise me. It’s been almost nine years since I’ve seen him. Appalling, I know. For a long time, however my Mum would take Seth or Freya with her, I always had to stay and look after Con. Con would never have coped at Grandad’s.

Will he be cross with me for not having visited? The door opens. My Grandad beams at me (an overwhelming gush of emotion in a house where, strangers are acknowledged by a handshake, but family are simply included in a continuing conversation, without their arrival being commented on).

“You’n been a stranger. Ya dunna need do that again.” (With a smile)
Then straight back into the horse racing.

Hospital visiting

(Simon to his Dad) “She’s been drinking your whisky.”
David leans towards me and winks: “She’s allowed, she’s my daughter-in law”.

* * * * * *

“Would you like a beer?”
“Does Janet know?”
“We’ve got one that won’t mess up your meds.”
“What if the nurses see?”
“Come onto the balcony with us.”
Chuckling he gets up and oh so slowly we ‘sneak’ outside for a non-
alcoholic beer in the evening sun. 330ml of fluid into him, no problem.
Smiling and winking all the time as he plays along with our being
naughty charade. I can’t help but smile whenever I think about it.

* * * * * *

David sees Janet arrive, smiles and winks at her…

After a couple of hours sat half-dozing together in neighbouring arm chairs, holding hands, Janet walks David back to his bed. I follow behind with the afternoon’s debris. I realise I am smiling at how sweet this couple are being with one another and catch the eye of a nurse doing just the same.

Teddy Bears

When she’s not knitting blankets for old people, my 96 year old grandmother-in-law knits trauma teddies. Her daughter then has to sew them up and stuff them. I did three one afternoon and then sat with Eileen who was delighted to see the bears plump.

“You’ve given them different expressions”, she laughed. “I like the sly one.”

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“Some people play the piano…”

My favourite moment in some time occurred earlier this week, during a visit. This conversation is between a person with dementia and their spouse who cares for them.

“Are you going to play the piano?”

“Some people play the piano, I don’t.”

“You could sit at the piano.”

(A look of confusion.)

“It’s that one over there.”

(Obediently sitting at the piano stool, with a look of total forlornness.)

“This hand does something like this.” (Approximating a chord)
“The other one is more like this.” (Runs a few notes together.)

(Brushing the demonstrating hands away, hesitantly a tune is tinkled.)

“That’s the thing, try again, louder.”

(A wonderful rendition of a tune from Salad Days pours out involving both hands and feet in harmonies and syncopated rhythms. The look on the pianist’s face is surprise and sheer delight.)

We are all blessed by this moment of grace called forth by love.

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On recognising the ground which is mine to walk in…

For some months now I have retreated inside myself. I stopped tweeting, blogging and minimised my Facebook time. I was drawn into a silence that was both comfortable and oppressive. It’s usually whilst exploring with words that I discover how I feel, what I think, even what I know about any given subject. For a time that has been lost to me.

In part, I must have been afraid of what others might think, of other people’s reactions to my thoughts and opinions. I know this because I began to find a way to write again, on paper, using a script of my own devising, collated from my knowledge of Hebrew, Greek and Hungarian. In this secret writing, I could be honest with myself and begin to learn once more what was affecting me, driving me, welling up from the depths of me, seeping into me from those amongst whom I move and what was desperate to be poured out in prayer.

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Another part of this silencing stems from a voice that tells me that what I have to say is of no help or interest to anyone else. That my life is simultaneously too ordinary and so far from most people’s experience that I cannot speak into the hubbub of online conversation and be heard. As I silenced myself, however, this voice grew stronger and began to convince me that in real life people wouldn’t want to speak to me, I couldn’t imagine why they’d want me to visit them or be at their events (even though I’m the Rector) and so I began to disappear.

For the past couple of months I’ve been actively making myself visit people, somebody each day. I’ve been making the phone calls that I have avoided. I’ve been present and visible at civic events. So now, I am beginning to write again. I know this post is just a thin chicken broth, but that’s just what’s needed when you’re weak.

 

What I have recognised is that right here in the diocese of Edinburgh, as I serve St James the Less Penicuik and St Mungo’s West Linton and live my family life I walk on unique ground. I am a female priest with Aspergers’s syndrome, with three children on the Autistic spectrum and a neuro-typical husband. That makes my perspective different to most but draws me into a number of communities that converse here on the inter-web.

So in the coming days, weeks and months you can expect me to be writing, reflectively, about a range of topics. I’ll tag them:

  • SEC, when they’re to do with the Scottish Episcopal Church.
  • Prayer, if I’m offering something more broadly to do with relating to God.
  • Neuro, if I’m mainly thinking about neurodiversity.
  • Aspie/Autie, if I’m specifically reflecting on being Aspergers or Autistic
  • Politics, for obvious reasons
  • Poetry, when my creative juices have been flowing
  • Heartbreak, when personally, locally or internationally life is causing my heart to break.

I hope you might read and comment on some of the posts and if no one does, the act of writing itself is healing, creative and draws me back into the world. I feel as if I am being ripped out of a heart tree from the forest in Uprooted, by Naomi Novik.