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And The Moonbeams Kissed The Sea

December 7, 2017

I’ve just been watching an episode from season two of Lewis. One of the central characters of the story is Phillip, an art student who is autistic. The second murder victim is another art student called Nell. There are several early scenes between Phillip and Nell and their relationship is sensitively portrayed. As the story progresses it is clear that Nell was the only character who cared for Phillip. In a way it was a love story, although Phillip didn’t seem to appreciate or respond to her love. To all the other characters Phillip was seen as an irritant, or tolerated, or seen as “interesting” or “a weirdo”. When told that Nell was dead, Phillip didn’t cry or ask questions but carried on with the landscape he was painting.

It got me thinking about love. Steven doesn’t do hugs. He doesn’t cry over deaths or sad situations. I don’t think he recognises when someone is doing something for him out of love. He never asks questions about love. In songs, it’s a word that doesn’t prompt any curiousity.

My mind went off to a meeting in the ATU. I had complained about Steven’s clothes being damaged, shrunk or disappearing. He was often wearing other people’s clothes, usually several sizes too small. After hearing me bang on about Steven’s dignity, the manager said something so chilling, I’ll never forget it:

“Steven doesn’t seem bothered. This is about your autism Mark”.

This appears to me to be the nub of why so many learning disabled people die uninvestigated, preventable deaths. It also may be why so many people are wrenched from their homes and incarcerated in ATUs for many years.

If the person doesn’t recognise love, does it not matter if love is given?

There’s nothing in the Mental Capacity Act about love. Nor the Human Rights Act. Nor the Care Act. Therefore it’s not surprising that you’ll never see love mentioned in someone’s care notes. If someone is a “case” or an object, then love is never going to be part of the equation.

Connor Sparrowhawk’s family’s love for him was attacked. In the quote from the ATU manager above, my love for Steven was mocked. Or if not mocked, certainly belittled.  1000s of people will spend Christmas in ATUs away from people who love them. Does it matter that they might not understand love?

I don’t hug Steven. That feels uncomfortable and forced. But I will do acts out of love. I’ve been out today and brought his Christmas Pringles. That’s a hug. That’s a little moonbeam kissing the sea. There won’t be a thank you but there will be a smile and a dance when I lay out the goodies on Christmas Eve. Another little moonbeam.

If the State is going to be involved in family life, it has to recognise love.

If not, we’ll continue with a framing of the learning disabled person as the unlovable who doesn’t need acts of love because they may not know how to receive it.

That’s not a life for anybody.

Or am I wrong to assert my idea of a life onto someone else?

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4 Comments
  1. Humans are motivated by love (except for psychopaths possibly? Or do they love themselves?)
    Our children look well as soon as they see us, and on their own terms too sometimes.. like their ‘normal’ peers.
    If the state is involved in families, of course they must understand (they can’t pretend not to) that we need love as they do in their little family units.
    At this time, I’m finding we (in my MDT) mention it a lot.
    Before, it seemed like an inconvenience and I was feeling ill and confused all the time, because the very thing that mattered just wasn’t being mentioned.
    I keep mentioning it, when needed, so it’s normal to bring it up. Even in our Maslow’s triangle it can’t be avoided.
    Professionals seem to be performing better this year. I wonder if they read these blogs? This is becoming a reference and research tool, I’m sure.

  2. judyb permalink

    Great, moving post.

  3. Actually, that manager who said “Steven doesn’t seem bothered. This is about your autism Mark” was not only rude but downright stupid, as he didn’t understand ‘respect and dignity’ (a CQC measure) and safeguarding people’s personal property..??
    When people with such a low IQ run services, they need to be exposed.

    People with autism know their own clothes, as we do, but won’t often know how to say. It will cause stress to not be dressed correctly.
    It’s the manager’s institutional behaviour that’s ridiculous – shocking you into not being able to respond, possibly?

    Steven might not show loving behaviours, but who can dare to say he doesn’t need love?
    My son listens to songs and looks very emotional, and looks happier when I hug him. He likes touch, and loves massage and linking arms, etc.
    People with autism are often too emotional. Look at Chris Packham’s BBC documentary. His trauma at losing his kestrel, and always living in fear of losing the people and things he loved.
    Hugging releases oxytocin which makes us feel good. That’s why Temple Grandin used and invented a ‘squeeze machine’ which she used herself – she invented it to help de-stress lambs and calves in animal husbandry.

  4. Jill Honeybun permalink

    My son has severe learning difficulties, brain damaged at birth after a botched delivery. He can’t read or write or do maths, but he is kind and loving and can do lots of other things well. He has always had the same opportunities as the rest of the family, included in everything, dressed the same, etc. His dad has died, I’m now ill, so he lives in his own flat now with “carer” support. He is supposed to be eating the food he likes, enjoying his hobbies, doing things he likes. However, his “care” involves staff putting a meal in the microwave, quick and easy so they can they play with their phones for the rest of the evening, according to my son. The more I complain, the more I am seen as the problem. My son wants to come home more and more, just so he can eat the food he likes and go places.

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