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Steven Neary Gets His Doctorate

February 20, 2014

Steven is my greatest teacher. I learn so many lessons from him. And yesterday, he delivered what could turn out to be one of his most important teachings.

For a long time now I’ve struggled with the idea that autism as a disability. Instead of a nice neat “disability” label that firmly establishes the power dynamic, I’ve started to see Steven’s autism just as a difference. Different framing. Different relatedness. Different communication. Different priorities. Different frequency. Different connectedness to the world around him. It’s easier for us to categorise this as a disability because to think any other way forces us to challenge our notions of reality. We may have to reconsider our ideas about how we frame, how we relate, on what frequency we operate.

I wrote in the last blog post “spent” about our experiences at A&E on Tuesday. Last night, I had a short dream where Steven was at a university, fully gowned up, collecting an honorary doctorate for his “outstanding contribution to the world of communication”. I could see the pun in “doctorate” – we’ve been surrounded by doctors for the past three weeks.

When we arrived at the hospital, Steven was having a pain induced meltdown. It was very noisy, very intruding and potentially aggressive and oh so easy to dismiss into a conveniently labelled box called “challenging behaviour”. We’ve got it arse about face. Steven’s reaction to the pain was 100% authentic. he was not encumbered by social niceties. The challenging behaviour came from everyone else by them not being able to tune in to this incredibly direct communication. The doctor wouldn’t start examining Steven until he had been sedated (Steven not the doctor). And then worse, once Steven was calmer and by chemically moved into the more acceptable world, the doctor still chose to address me rather than Steven, although Steven was making himself very clear. How’s this for clarity: “Steven Neary’s got a bad pain. Want doctor to get his machine and make Steven Neary all better”. There was nothing aggressive about his words or actions but I could see the staff were slightly threatened by this level of directness. Compare this to me. I was reasonably assertive but rather hand wringingly polite and kept, unnecessarily expressing my gratitude. Last night I wrote a letter to the GP in preparation for Steven’s appointment with him today but when I woke up this morning, I tore it up. I was playing the part of the “grateful father” when all that was really needed was “please do an urgent referral to the urologist”.

We get so uncomfortable with real communication – it seems to threaten our very core. When Steven used to go to the respite centre, there was a female member of staff that he didn’t want to have anything to do with. At a meeting with several professionals, Steven told us why – “K does massive smelly farts”. People squirmed. People tried to dismiss it as a joke. People tried to use it to teach Steven about acceptance. But what bliss to be able to express your complete phenomenological experience of someone/something. And how confusing to have others try and distort that experience because they can. Because you are “disabled” and need to learn the rules.

A lot of my writing is about language and communication. I write a lot about my confusion of the language of the social care world. I understand it better now. Not the words. But I understand the intent, which as I see it, is to hide, to conceal, to distort. Steven uses langauge to illuminate – in the social care world they use language to fog.

To deal with the threat of such authentic relating, the social care world (and the wider world probably) has had to devise systems to lessen the impact of the communication. The autistic person’s wave frequency gets blocked or scrambled into something the wider world can cope with. It doesn’t matter where that leaves the autistic person – more than likely it will lead to meltdown which of course, confirms fits like a glove into the system the world wants.

But just supposing, Steven has got it right and we have all got it wrong. That would be a turn up for the books.

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From → Social Care

6 Comments
  1. Alice Moore permalink

    Steven is his authentic self whereas the rest of us put on a polite mask and don`t quite say what we mean. Politicians and their state agents are good at that, aren`t they?

  2. Lisa permalink

    Steven has got it very right. Much like my son. He once said to a teacher
    ‘ your breath smells of poo’ ( she obviously had stinking breath) He was then told, you don’t say that you say ‘your breath smells of roses’.

    Shameful.

  3. Weary mother permalink

    My son has Down’s. He is late middle aged. He has lived ‘independently’ for over twenty years.
    He is a wise and intelligent man with a wry sense of humour, who has seen all and received all that a particularly aggressive defensive (nasty?) LA can demonstrate. His life of ‘independence’ was for years, and to some extent still is, depending on the care manager and LA leadership, controlled at every level, from his day care, his home, his level of support and his primary relationship. He learned not to comment on anything. He knows more about the culture and personalities of his LA than most, but says nothing. Every thing is always ‘fine’. He has his PhD in keeping his head down.

  4. Shirley Buckley permalink

    Isnt Steven blessed to haveyou as a father

  5. Sally permalink

    I can’t follow you all the way there Mark,almost all but not quite!
    I believe wholeheartedly that much of the carespeak was taken from parents, carers and workers with their hearts in the right place who genuinely wanted to describe disability in the most non judgemental way possible which wasn’t tinged with the prejudices of the past. So: Mongol became Downs syndrome became HAS Downs syndrome, retard became learning disabled etc etc. The idea of a collection of flaws became the idea of extra needs.

    Alll good stuff. Nowadays the language is also used to conceal cutbacks, and to paint over and hide need. My problem with describing autism (my son’s condition) as “on the spectrum/has autistic tendencies/just sees things differently” is that we are then a step away from help and services being withdrawn and presented as a blow for independence. As in: “we’re all on the spectrum, Ha Ha”. (Yes, but you can cross the road/catch a bus/tell the time/make millions of social judgenments) Or:”Why label your son, he just sees things differently,” as if my son were a charming eccentric who is excercising a choice which I am wanting to deny him.

    Its about choice. Non autistic people can choose how they wish to act with others-be more or less inhibited, follow or ignore social rules, be blunt or tactful.To say someone smells is true but it can be unkind or rude, and if my son could chose I’d ask him to think about when and how to say that. He can’t. He blurts out obsevations and statements of immediate need come what may, and its refreshing and so on ,but its also sad that he will do that even when it would be much much better to say nothing. (Eg: To a passing thug)
    The autistic have no or a very limited choice. I would give anything for my son to have that choice-and then if he wanted to express himself differently when he chose that would be his affair. But he can’t and his autism disables him from being able to so, so much as a result. I am happy to celebrate him, but I can’t edit out what he can’t do as a result of his condition .
    I do agree that blunt, straighforward comunuication with no hidden agenda is incredibly refreshing after a session with the Local Authority’s doublespeak. You must be exhausted.

  6. Karen permalink

    Great post this morning.

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