Disability and education: truth telling in trying times

In 2019, overwhelmed and hopeful, I began my Bachelor of Music (Music Education) degree at the Sydney Conservatorium. Since then, I’ve been making posts on this blog for various Music Education assignments, reflecting on seminars, learning guitar, playing gamelan, and the occasional bit of dry (but necessary) research.

This post, though, I’m writing just because I want to.

Halfway through this year – 2022, what would have been the final year of my degree – I had the privilege of doing three weeks of prac at Wilcannia Central School, a small school in far west NSW with an entirely Indigenous student population. My friend Jay and I received the warmest of welcomes from the school and local community, and I left Wilcannia with a renewed vigour for teaching, something I sorely needed at that point in my degree.

Then I returned to Sydney, and my body broke down.

Bedbound for days at a time, my sleep became erratic, my mind hazy with fatigue. This was not new to me, but what was new was the pain: the insistent, dull ache that burrowed its way into my muscles and tendons one day and never left. After a string of appointments, I was diagnosed with fibromyalgia, a disorder with an unknown cause and no cure.

I missed most of the final intensives. My final prac was postponed, rearranged, and then postponed again. Weeks away from finishing my degree, I was forced to admit that graduating with my cohort would be an impossibility. I discontinued all my units, the plan being to repeat them in Semester 2 next year, if my health allows.

If my health allows. I don’t know yet. That’s one of the things about chronic illness: when you first get sick, you have to get used to a whole new set of limits your disability imposes on your body. “Normal” things like household chores, study, work – even basic necessities like eating, showering, leaving the house – become almost insurmountable obstacles in the course of your day. Over time, you get used to your new boundaries, and your friends get used to the fact that you’ll get twelve hours of sleep a day and still be exhausted; that you need a walker or your legs will give out on you; that no, sorry, you can’t go to the party because you have a doctor’s appointment (oh, the endless string of doctor’s appointments!) that week, and one long outing a week is all you can do.

But your friends don’t see when you collapse in bed when you get home, too tired to move, but hurting too much for sleep. They don’t feel the constant weight on your chest and back, compressing your breathing. They don’t; they can’t. Empathy has its limits. You cannot feel someone else’s pain for them. It is the most isolating thing I have ever been through.

I am writing this post for a couple of reasons. One, because I want to tell the truth about my condition in all its ugliness. I am angry and sad to have fibromyalgia. I am disabled, and I do not want to be. That is the truth. But instead of shying away from the subject because it is difficult, I want to be loud. I don’t want disabled people to disappear, relegated to the sidelines of society, an unsolvable problem others are tired of hearing about and working around. I feel no guilt about inconveniencing the system, because the system was not built to keep people like me alive. Silence does not make change.

The second reason is a call to action. My fellow educators, and those patient enough to read this far: please don’t leave your disabled students behind.

No, let me rephrase that. Teachers, friends, you will leave your disabled students behind. You probably already have. There are kids in your classes who are undiagnosed, who are quietly struggling; kids who have visible disabilities, who are shunned by their peers; kids whose suffering leads to behavioural issues, who your colleagues dismiss as troublemakers and brats; kids who the school is trying to support, but whose families are doing them more harm than good. No disability is easy for an educator to work with, just as no disability is easy for a disabled person to live with. You will complain about having to make extra allowances and changing your programs and making your classroom accessible. You will leave the heavy lifting to the disability support staff, should you have them. Kids will leave school and become adults who reminisce bitterly about not receiving support when they needed it. And you will have failed those kids.

Because you are human. Humans make mistakes. Humans take the easy path, especially when they are overworked and underpaid. I have seen the daily struggle educators like you go through, trying to survive the piles of paperwork, the extra hours, the bureaucracy, the unreasonable demands. To ask you to go the extra mile on top of all that must seem like asking for the moon.

But I will ask anyway. You chose this career for a reason. Surely not for the money (what money?) or because yelling orders at kids makes you feel powerful (though I’ve certainly met teachers like that…), but because once upon a time, you wanted to make a difference. You wanted to work with young people, raise them up and believe in them, guide their path to success whatever that may be. Maybe that spark is gone, smothered by years of drudgery and bitterness. But maybe it’s still there. It’s to that spark I say this:

A disabled student is in your school for six, seven years tops. They will be disabled for a lifetime.

When they graduate high school, they’ll be eighteen. They’ll have sixty, seventy years of navigating the world as a disabled adult. They’ll likely have difficulties finding work, establishing relationships, getting support from a government that wishes they didn’t exist. And they’ll look back on their school days as their first taste of this world, the years that taught them one of two lessons.

Perhaps they learnt that nobody will look out for them, that they are an inconvenience at best, that their disability is their problem to deal with, that the world is cruel and harsh to those whose needs and abilities do not conform. Or perhaps they learnt that the world is all of those things, but there are spots of light – warm people who do their best to understand, to walk the difficult paths with them, to raise them up. That disability can feel isolating, but they are not alone.

You are powerful, educator. You get to choose which lesson they learn.

Which will you choose?

Gamelan Week 3: Finally Playing Some Music

Final intensive. I threw off COVID and my shoes, and was instantly put on kempli, the small drum used to keep time, for two songs.

https://drive.google.com/file/d/1YeCLZuezh1MJxggk53xFORbjINqFKXUP/view?usp=sharing

I kept my eyes on Peter’s drum pattern, changing tempo whenever he did. Concentrating hard, I tried to play as one unit with him. There was something mesmerising about being so focused.

One thing that stuck with me was the revelation that Orff instruments were inspired by gamelan. It made sense – Carl Orff was a notorious melody thief, but the structure of the instruments, even the techniques of chunking and rote learning and ostinati, were familiar. The older I get, the more difficult I find picking apart these layers of colonisation and assimilation and appropriation and fusion.

Peter felt good about returning gamelan music to Orff instruments in light of this. I’m still not sure.

But then there was playing the reong with Bridgitte, Jess and Lara, each of us on one note, splitting the rhythms between us. And that was focus in a different way – following the beat, the loudness chasing evil spirits away. I smiled when Peter mentioned Chinese lion dancing. It’s the same principle.

It’s nice to think about our similarities sometimes, too.

There was a moment: I was playing the jegogan, and as the panggul hit the huge keys I couldn’t distinguish the sound of my own instrument from the wider vibrations in the room. One sound. I thought about music’s capacity to unite as much as it divides.

Then I put my shoes on and went home.

Extra thoughts:

Gamelan Week 2: On Authenticity, and in Remembrance

Still got COVID, still couldn’t come to class.

Today, learning about the different contexts of gamelan in Bali – temple ceremonies, funerals, royal courts – reminded me of the expansive nature of music. So many things, for so many people.

And there’s only so much you can learn about context from Wikipedia articles and pictures on a corkboard. Especially non-Western contexts – you ever tried comparing the Google searches for gamelan with those for classical violin music? You can probably guess the results.

The aforementioned corkboard. The white and black outfits symbolise balance, if I remember correctly.

But you can’t take your class to Bali, so what can you do? You can set up relationships with culture bearers and those like Peter Dunbar-Hall who’ve spent their lives studying the art. You can bring your students to places like the Con. In the meantime, you can use those Orff xylophones, if you’ve got them, and even build your own Micro:bit gamelan in class (shameless plug) if you want to supplement those Western tonalities and non-sustaining notes with some tuning and damping of dubious authenticity.

But there’ll always be something missing. Maybe part of culturally responsive pedagogy is being reconciled to that, and trying anyway. Both for the culture you’re representing, and the students you’ve got.

And I won’t dwell on this too long, out of respect, but there is someone missing too in the gamelan room; someone who taught me to learn by doing, the Balinese way, to sit and listen and laugh at my own mistakes. Thanks for your wisdom. I’ll pass it on.

Thoughts here:

Gamelan Week 1: Some Reflections from My Bedroom

Balinese gamelan is an art form I have loved for years. So you can imagine my disappointment when I wasn’t able to attend the first of three intensive sessions due to being bedridden with COVID. Fortunately, I had done a semester of gamelan previously, so between walking down memory lane and living vicariously through my classmates’ photos, I have something to talk about.

Here’s one now! Peter Dunbar-Hall demonstrates what I can only assume is how to hold a panggul.

Hearing familiar words – lagu, kotekan, polos, sangsih – brought me back to Semester 2, 2019, when every Tuesday afternoon I’d take off my shoes and learn; chunking melodies until I knew them by heart, fumbling my way around damping until it became second nature.

I remember once a student asked if he could notate the parts to learn them. “You want me to walk out of here, is that it?” the lecturer snapped back as the class laughed.

Now, is there value in notation (Western or otherwise) for teaching gamelan in a classroom context? I won’t say there isn’t – I think tools for accessibility are important, as are making links to prior content. That being said, I think it is more important that we learn ways of musicking that are rooted in existing traditions, instead of assuming that those in charge will always bend the rules in the direction of a dominant English-speaking culture.

So there you are. Technique number one: learn by doing, not by reading, not by any of those hacks those using music notation take for granted.

Some extra thoughts:

The Great Gamelan Project: An End and a Beginning

The TME Presentation of Learning was yesterday night, and what a great night it was! I was so excited to see everyone’s projects, and it did not disappoint. Agnes’ beautifully drawn picture book made me laugh, Angelina’s slam poem almost made me cry, Suzie’s radio theremin and Charis’ badminton remix made me gasp in amazement, and I’ve even got a little bookmark and sticker from Lilian’s picture book that I’ll treasure.

And I got to talk about the gamelan that almost wasn’t to lots of lovely people: some kind strangers, and also some familiar faces. Caitlin, James, my friends from my cohort, and – incredibly excitingly – Rowena and Renee from way back in Week 6 (back when I was still referring to Micro:bits as “tiny robots”) who introduced Micro:bits and Kookaberries to our TME class and sparked the idea for this entire project. I was touched by how excited and engaged they were by my idea, and Renee even took some photos for her Twitter (!).

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Photo creds to Renee Noble and her Twitter.

Rowena, who had studied ahead by reading this blog, had a question for me that took me by surprise.

Did my experience give me an insight into how my students might perceive failure?

I can truthfully say that yes, it did. When you fear failure, or don’t understand it, it becomes paralysing. You know you went wrong, but you don’t know how to fix it, or where to start. You just want to walk away from the whole thing – and many students do. Who can blame them? If they’re not being given the support or feedback needed to acknowledge their failures, to embrace them and learn from them, then how will they learn to do anything but give up? I’m so bad at this, I’m just not musical, I’m not like them. I can’t do it, I’ll never be able to do it.

I failed becomes I’m a failure. Intentional or not, that’s the sort of thinking we often encourage in our students when we focus on the result, not the process. And that’s not acceptable.

That’s what this project, and the Maker Movement, is about. Having a go. Using your hands to make something. If it doesn’t work, great! Let’s figure out how to make it work. Either way, it’s fun, and it puts power back in the literal hands of students. I’m planning to do a similar project – with Western notes and xylophones – with my prac students tomorrow. If it fails, oh well. I’m having a go.

To whoever you are: thanks for reading my blog this semester. This little website has seen me grow from naive, opinionated first year to slightly less naive but still opinionated third year, and I’ve learnt a LOT in this year alone. To everyone who has touched my life in the Music Ed sphere, whether as a lecturer, a friend, or a visitor with wisdom to share: thanks for the ride. It’s my honour to learn from you and with you every single day.

Here is a step-by-step guide to making your own Micro:bit gamelan, complete with code and templates.

Until next time, friends 🙂

James

The Great Gamelan Project: Victory at Last (kind of)

So after last time, I was really not feeling good about this project. But I got over myself, I hauled myself to Jaycar Electronics to buy crocodile clip leads (or jumper leads or alligator clips or one of their many other names) and I patched it together, thinking I would have to redo the code or the pressure plate structure anyway, and this was just a bandaid solution.

And surprise…it worked. Sigh of relief. Then I put some finishing touches on: I painted the keys gold (y’know, for immersion), I taped the crocodile pins to the Micro:bits with electrical tape to make sure they wouldn’t get knocked out of place, and I found a wooden beater from a toy xylophone I had in my cupboard. (I bought it for my D&D party a while back. They were a band of travelling musicians. I’m all about that realism.)

Here’s the final product from the outside:

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And on the inside:

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I put some electrical tape on to secure the keys.

And then I tested it out:

I’ll explain a bit about the design now that I know it works. Here’s a diagram of the base (it’s repeated exactly for the other two keys):

And here’s how the top keys cover them:

When you tap the middle of the lowest key, the foil on the top key touches the foil bits on the base, and the circuit closes between P0 (the first pin on the Micro:bit) and GND, which stands for ground. This sends the signal back to the Micro:bit, which plays the note I’ve coded to that pin (385 Hz, which is a sort-of G). The next key does the same, closing the circuit between GND and the next pin, P1.

These notes will ring indefinitely unless you damp the key by pinching the end of the instrument, the way you would on a real gamelan. When you do that, you close the circuit between GND and P2, which I’ve coded to “stop all sounds.” Sweet silence.

Now for the million dollar question: could you actually use this in a school? Well, I think so, but in a specific way. I designed this project not to replace Orff xylophone-based gamelan teaching in schools, but to complement it. This instrument I’ve made is inconsistent and can’t actually be used to perform repertoire – plus, it’s made of cardboard and would be really easy to break. (Not a challenge. Please don’t do it.)

But if you were to make it with your class, it demonstrates these important things: 1. Gamelan notes are not tuned to Western scales, as seen when you input the frequency; 2. An important part of gamelan playing is the damping; and 3. I didn’t have enough Micro:bits to do this, but if I had I would have made another gamelan with slightly different tuning, as gamelan are paired. If your school had access to a class set of Micro:bits, or even just 6 (enough to make a pair of six-note calung), students could learn these three vital parts of gamelan music hands-on by doing this project.

Plus it’s the Maker Movement of it all. Is there any more obvious way to take ownership over your own learning than to make it yourself? If you have directions, the process is quite easy. The code is extremely simple, and the craft bit is not difficult either. Definitely something you could do in one or two lessons.

So overall, I think this project was successful. Do I wish it worked better as an instrument? Of course. Do I think my gamelan will wow anybody at the showcase? Not really. But for what I set out to do, I haven’t strayed too far off the mark. I’ve learnt a LOT about Micro:bits and coding and problem solving, and also about not giving up too easily. I feel pretty proud.

The Great Gamelan Project: Another Setback

I did it. I glued foil to the gamelan and I taped up all the wires and I fashioned little foil wires to replace the crocodile clips I don’t have, and…it didn’t work. So much could’ve gone wrong, and I don’t know which step it was. All I know is that it didn’t work.

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No sound out of the Micro:bit. I feel defeated. I guess I’ll just have to try again and fix every problem, bit by bit. But I’m not sure this project is feasible anymore. It’s too late to back out now, though.

I think sourcing some crocodile clip leads might help. I guess that’ll be my next step. If the pressure plates don’t work, though, I’ll have to go all the way back to Renee and Rowena’s presentation and the Play-Doh xylophone, and see if I can make anything out of aluminium foil that vaguely resembles it. That stuff is inconsistent and the results don’t sound that great. I don’t want to have to go there.

I’m exhausted.

The Great Gamelan Project: MadeMoreCode (and an instrument-like thing)

Alright, after some feverish experimenting, here’s what I’ve got. On one Micro:bit:

And on the other:

This is going to be a FOUR-note calung, with one Micro:bit playing two notes each. Now the code is really simple here – pretty much just hit pin, make sound ring indefinitely. Except for P2, where if you hit it, all sound stops, similar to the damping on a real gamelan.

The complicated part is the pressure plates themselves. Here’s what I’ve got so far – I’ve cut pieces of cardboard to look like gamelan keys.

This is the back. Simple enough:

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This is the front (the other two keys will be set out in the same way):

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The blocks represent pieces of aluminium foil. Each of these keys will be covered by another layer of cardboard with some foil on the inside. When pressure pushes the layers together, the circuit completes and sends a signal to the Micro:bit. The letters represent which pin the foil pieces will be connected to.

Here are the top layers of cardboard:

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Next step: put foil on, rig up the wires, and test this out.

The Great Gamelan Project: MadeCode

I made some code. This is a first draft, and I’m really not sure it’ll work. Nonetheless, I made it. I based it on the pressure switch alarm code from the site: Pressure switch alarm | micro:bit.

The sender:

The receiver:

It is occurring to me, though, that I could potentially bypass the whole radio thing because the original code is for a remote alarm, while there’s no need for that kind of removal here. I could probably just program the notes straight into the pins. In that case, I could probably make my paired set of (three-note, alas) calung after all.

Watch this space.

James’ Secret (Composition) Diary: Entry 7

The workshop with Quart-Ed was fantastic – what a talented bunch of musicians! I’ve been fortunate enough to have had my pieces workshopped by musicians several times in my life, but it always feels incredible to have real live people play your dots and squiggles. I’m really quite proud of this piece, and it was so lovely to hear them.

They had very few points to raise with me, which I consider a success. Sarah asked that I change some rests I accidentally grouped badly, so I did:

WRONG
BETTER

And after trying out the slurred openings versus the separate-bowed openings, we all agreed that the slurs are better, after all. So I’ve put them in, and added them throughout the piece.

Now it looks like this.

But other than that…I think I’m done.

This has been so, so much fun. I was a Composition minor before I started Honours, and I’d forgotten how much I miss it. Thank you Caitlin, thank you Quart-Ed, and I guess it’s time to press submit.