Diagnosis: Label, or The Day I Met Michael Nyman

This is a little post about diagnoses. About getting them, shedding them, collecting some more, using them as a pragmatic stepping stone, and ignoring them when they get in the way…. It’s a post for parents, really, but it’s also for teachers, and for everyone else in the community, too.

And this post begins with the day I met Michael Nyman.

It was a film and sound conference being held in London back in April, 2000, and I was there on the spur of the moment. No university had sent me, no institution or corporation had decided I should go – a week or two before the conference began it had occurred to me that I absolutely had to be there, and, despite the short notice, the conference organisers went above and beyond to make it easy for me to attend.

So when I turned up on the first day, a bitterly cold London spring morning, and discovered that my nametag listed me as “Elissa Milne: arts administrator” I thought to myself not much more than a quick “ha!” and that was the end of it. Composer, arts administrator, who cares, right? I’m still me no matter what it says on the name tag or lanyard.

The conference was sensational, and even with my overwhelming jet-lag, I was loving every minute. A highlight was always going to be the presentation and Q & A with Michael Nyman: an exploration of his process and experience working with Neil Jordan on the score of The End of the Affair.

It was an amazing session – Michael Nyman had clips from the film showing the music he had composed for specific scenes and then clips synced to the tracks that Neil Jordan had ended up going with (i.e. not the ones Michael Nyman had composed).  The contrast in emotional affect was extreme, and, distressingly for Michael Nyman, there was an equally large contrast in compositional excellence. The tracks he’d intended to be used for these scenes were superb. The tracks Neil Jordan had gone with were random, by way of comparison, and included accidentally recorded mucking-about-at-the-piano, for example. The audience at the conference had every empathy with Michael Nyman, and we all gasped at the egregious erosion of his professional reputation through these directorial choices.

And then it was time for the Q & A.

Well, why not?, I thought as I raised my hand to ask a question. There must have been thirty or more hands in the air, but somehow I was chosen as the third questioner of the session.

“In light of the profound improvement to the film that your original score would deliver, have you considered discussing with Sony the possibility of issuing a ‘composer’s cut’ of the film?”, I cheekily asked.

The conference crowd greeted my suggestion with enthusiastic approval, applauding their agreement that this was a Very Good Idea, but Michael Nyman was more than a little scathing in his response. I didn’t much care. If it were ME who’d written the score I would have loved to create my own cut, and I knew that other conference attendees would take the concept of a “composer’s cut” film away from the conference with them, which was cool, and, of more immediate consequence, I’d get some good conversations between conference sessions for the rest of the event.

The first person to approach me at the break, however, was Michael Nyman himself. He was polite, but still a bit agitated from my question.

“If you were a composer”, he told me, “you’d realise how ridiculous a suggestion that was.”

I laughed and began to protest that I am a – and then I saw Mr Nyman looking at my name tag.

I wasn’t a “composer” at that conference. I was an “arts administrator”. My question wasn’t that of a fellow creative expressing solidarity, but of an aspiring arts bureaucrat.

So, instead of replying that I am a composer, I soberly agreed that if only I were a composer I might well see things the way he did, too.

The conference ended; I took off the name tag, and, still in London, a few days later, I had a meeting where I learned that some of my piano music was being included in the Trinity College London examination syllabus for the very first time. Whatever I’d been at the film and sound conference, now I was a composer whose music was about to go global.

There’s no avoiding it: what it says on your name tag DOES change the way people see you. It DOES change the thoughts you’re allowed to have, the questions you’re allowed to ask, the jokes you’re allowed to make, and the opportunities that come your way.

Parents are terrified of their child’s name tag disqualifying them from what life has to offer, from opportunity, from inclusion, from acceptance, from happiness. So they exert enormous effort in minimising the appearance of their child’s differences and outside-the-bell-curve unique imprint of what it is to be a very young human. Parents seek the kinds of professional help that won’t label their child, and they avoid the kinds of help that will. It’s exhausting, and frustrating, and all the time it’s terrifying, too.

It makes sense! You want your child to get the name tag that helps them get the most out of life, no?

So why in the world should a parent embrace a diagnosis, a label? Why shouldn’t a parent keep the possibility of their child being “labelled” well at bay? Isn’t a label just a pathologising of childhood? Especially labels like “ADHD” and “autism” and other kinds of ‘spectrum’ diagnoses that are given to kids who are just more/less {whatever it is} than others?

The thing about a spectrum diagnoses (as compared to a disease diagnosis) is that the diagnosis emerges from an accrual of micro ‘diagnoses’. None of the disorders involved in a spectrum issue are actually a ‘thing’ per se – they are reifications of behaviour. So, say my child were to lick playground equipment (looking for something a tad extreme here as an example) this would be a behaviour that would be noted; should there be more behaviours of a similar ilk then my child may well get diagnosed as having issues with sensory processing. This one label might be called into play, or maybe another – but the label itself is just a “thingifying” of the behaviours that the child is demonstrating.

Once you/your child collect(s) enough of these “thingifyings” then you qualify for a grand prize, aka a spectrum diagnosis. Can’t focus? Can’t stop chewing on clothes? Can’t make eye contact in a conversation? Don’t seem to be able to imagine what it’s like to be someone else? Want to talk about your own interests all the time, with no interest in what someone else is saying? etc. etc. – you’re collecting a bunch of elements that will win you an ASD diagnosis!!! HOORAY!!! BOO!!! Or if you just have the can’t focus bit, along with some not being able to sit still, not being able to pay attention to something that someone else is talking about, constant changing the subject, etc. then you’ll probably have someone come along and award you the ADHD gold star!! WOOHOO!!! SIGH!!!

They (the experts/the system/the capital t They) don’t know what causes these Things to occur, exactly; They’re undecided as to efficacious treatments, and They have a propensity to suggest chemical solutions. They can’t run a blood test to support their claims, and They can’t take an X-ray. Biopsies come up blank, and ECGs reveal little to nothing pertinent.

The only value in a diagnosis lies in the following:

  1.  potential access to funding and support
  2.  less explaining to do/more understanding when interacting with new people
  3. a focussing on potential options for making things more manageable for the family unit
  4. a reassurance to the parents that they didn’t a. eat the wrong food in pregnancy, b. take the wrong drugs, c. engage in inappropriate parenting choices (breast-feed for too long, too short, too often, too infrequently; make their child cry themselves to sleep as an infant/sleep in the same bed as the parents, etc. etc.) d. otherwise totally screw up in any way. This is a massive boon for many parents, taking a lot of pressure off already stretched relationships
  5. a permission to expect different developmental trajectories from the child (stop worrying that the child doesn’t do x yet, or is more introverted than contemporary norms of childhood allow)

Now, to my way of thinking, each of these values is enormous. But then what do you do with that label the child has just had added to their curriculum vitae? Even with all these positives, isn’t a label a negative, no matter how you spin it?

This is where we get to a super important part. It’s simple, but it’s super important. And it’s this: once the purpose of the label has been served, don’t forget to take the name tag off. The label isn’t who you are, who your child is. The label was just there so people could help you better, so they could quickly know a little bit about what you needed, and why you were needing what you did.

If that label is now getting in the way, if it’s stopping you from accessing support, understanding, opportunity, take the label off.

Whatever you choose to put on your/your child’s name tag, please remember (and believe) this: a good teacher/neighbour/friend sees the label for the value it brings, the doors it opens rather than the doors it shuts, the chasms it bridges rather than the chasms it might create.

Next: don’t keep wearing the same labels if they no longer fit, even if that label that seemed pretty perfect a few years/months/days ago.

And finally: it’s really important to remember (and believe) that sometimes it’s the label “normal” that you/your child could do without. Trying to fake “normal” can put incredible strain on a kid who really isn’t. No one in their right mind would try to avoid being labelled “diabetic” if that’s what they were.

The right label can change and save your life.

Don’t be afraid to wear it when it helps.

 

4 thoughts on “Diagnosis: Label, or The Day I Met Michael Nyman

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