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Life as a Musician with EDS Part 2

*Please read part 1 first*

Where my last post left off: I was in sixth form, and hoping to get a place to study at a conservatoire but I was being plagued with migraines.

I decided quite early on in year 13 that I would take a year out between A Levels and Higher Education, this would give me the time to resit any exams that I needed to (I had been so ill that I knew I wasn’t going to do well) and for my health to (hopefully) improve. It also gave me the opportunity to do A level music as I hadn’t done it the first time round. This turned out to be a very good idea as the morning after I had done my last A level exam I was rushed in to hospital for an emergency appendectomy. It turned out I had been suffering from a grumbling appendix for at least 2 years and the stress that it had been putting on my body is what was making my migraines so bad. Once I had recovered from surgery my migraines quickly settled down and now I only get them around once a month. Unfortunately though, this was far from the end of my health affecting my music.

As I prepared for my conservatoire auditions I began practising my oboe for hours at a time. I was thoroughly enjoying it and my confidence started to grow again. However, I began to notice that my hands would get sore after I had been playing, particularly my right thumb which takes the weight of the Oboe. I already had a feeling that there was something going on with my health other than just migraines but I didn’t consider this to be an issue. Thinking it was because I was no longer used to playing for such long periods, I started to spread my practice out over the day rather than doing it all in one go. I hoped that this would help build up the strength in my hands, but after a few weeks there was no improvement. I began to worry (again) that this would stop me from being able to maintain the standard needed to study at a conservatoire so I decided to apply for universities as well.

By the time I had done my conservatoire auditions and my first offer had come through it had become obvious that the problems with my hands were not going to go away, though I still hadn’t really accepted  that I wouldn’t be able to perform for a living. I made the decision that I would go to a university, to give myself time to sort my health out, and then would go to a conservatoire at post-graduate level. That’s how I ended up at Keele University.

I actually ended up going through clearing as I only got a D in A level music and this really knocked my confidence (again!). I now know I deserved a higher mark (both of my fellow A level music students had theirs remarked and their grades went up from Ds to a B and an A) but at the time I was devastated. Because of this crisis of confidence, the degree I started was Maths and Music, though I had dropped Maths by the end of my first year. Although I didn’t enjoy studying Maths anywhere near as much as I had at school, I don’t regret doing this; I needed to regain confidence in the fact that music was what I wanted a career in. It may seem a bit contradictory but through all this, I still held on to the idea that I would go to a conservatoire at post-grad; my mental state was too unstable for me to come to terms with the fact that my body would stop me performing to a high enough standard.

All the while, my hands got progressively worse and it got to the point that I was struggling to hold my oboe for longer than about 10 minutes, after that my thumb would sublux (partially dislocate). Again, I found that Saxophone was the solution; the fact that the weight was on my neck rather than my hands made it a lot easier to play. I began playing the saxophone in Keele Concert Band and Keele Big Band and, eventually, bought myself my own tenor Sax. I regret it now but I stopped playing my oboe outside of performance class, when I would have to tape my hands using kinesiology tape. I think I was in denial; if I didn’t play then I could ignore the fact my hands couldn’t cope with playing. I couldn’t deny it for ever though, my hands continued to get worse and I started to have to tape my hand when playing the sax and even writing.

I got my diagnosis of EDS in the Easter holidays of my first year at Keele, and it is one of the best things that has ever happened to me. I also have OCD and Asperger’s syndrome so when I was diagnosed I became obsessed with learning everything I could about EDS. I began to understand what was happening to me, which meant I could start to come to terms with it. We had to go down to London to get the diagnosis so, after quite a lot of persuasion from my parents, I took my oboe and, on the same day, took it in to Howarth of London. They swapped the thumb-plate to one which can be hooked on to a neck strap. This took a lot of the weight off my thumb and I started to enjoy playing again.

Unfortunately though, this was only a temporary fix.

In my second year at university I made one of the hardest decisions I have ever had to make: I dropped performance. After dislocating my jaw (a problem that is now a regular part of my life) I had to postpone my first year recital and over the summer my hands had continued to deteriorate. My head was in a much better place when I started my second year (I don’t think I’d have been able to make that decision if it wasn’t) but it wasn’t until it was suggested by my doctor that I needed orthotics for my hands that I really accepted that performance wasn’t going to be an option for me. It was very difficult, but both my parents and the university supported me.

I decided that I wanted to take composition back up, so the university let me sit in on the first year module so that I could take the second year one. I found composition was a brilliant way of still being involved in the creation of music without being limited by pain.  My love for composition has only grown; I have had works performed by a number of different groups, was awarded a composition fellowship, achieved a first-class mark in my final-year composition project and am currently studying a composition module at Masters level.

Once I had come to terms with everything I was able to rethink what I wanted to do. I used my experience with EDS to inform my undergraduate dissertation, which explored the possibility of using musical performance as chronic pain management, and, through this, found an area I was very interested in; Music Psychology. I decided I wanted to go into research so that I could use my own experiences as a disabled musician to help others in similar situations. I am doing exactly that, and loving every minute of it; I am currently doing a Masters in Music Psychology and will be starting a PhD in September. My current research draws on my experience as a musician with an Autistic Spectrum Condition.

It has taken a few years of trying different things but I now have orthotics that allow me to play both oboe and saxophone at a high standard. I will never be able to play to the standard I did when my problems started as I will always be limited by my EDS but I’m OK with this now. Being OK with it has allowed me to start to enjoy playing again.

I am incredibly lucky that I have now found bands and orchestras to play with that are fully understanding of my condition, but that hasn’t always been the case. Some of my worst experiences as a musician with EDS were caused by the perceptions of other people. As EDS is an invisible condition it’s not always obvious that there is anything wrong. In the past I have been labelled ‘lazy’ for not helping to load heavy amps into a car, and ‘unreliable’ as I missed a rehearsal due to having a migraine. I am neither of these things, I am just limited by pain, fatigue, and a whole host of other health problems.

I hope this has given you some insight into what it’s like to be a musician with EDS. Just remember, you don’t know what is going on with the ‘lazy’, ‘unreliable’ (or even just grumpy!) member of the orchestra, so don’t judge!

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Life as a Musician with EDS Part 1

10363687_10204127642014020_4256059684415211925_nMy name is Rachael, I’m a 23 year old postgraduate student at the University of Leeds and I am one of the organisers of Cripping the Muse. I was diagnosed with Hypermobility Ehler’s-Danlos Syndrome (HEDS) on the 4th April 2015. Although I didn’t get my diagnosis until I was 21, EDS has had a massive impact on my life, and my relationship with music, from a young age.

The Ehler’s-Danlos Syndromes (EDS) are a group of 13 rare connective tissue disorders which are caused by genetic mutation. In most types of EDS, including HEDS, the genetic mutation causes a fault in collagen, meaning it is fragile and stretchy. Collagen can be found in muscles, tendons, skin, blood, organs and almost every other part of the body, EDS is a multi-systemic condition; it affects multiple parts and processes in the body. Because of this, most people with EDS have a number of comorbid conditions.

The main symptoms/comorbid conditions of EDS that affect me are:

  • Joint hypermobility
  • Chronic pain
  • Chronic fatigue
  • Regular dislocations and subluxations
  • Chronic migraines
  • Chronic idiopathic uticaria
  • Gluten+egg intolerance
  • Postural Tachycardia Syndrome (PoTS)
  • Depression
  • Brain fog
  • Easy bruising

Although musical performance has always been a big part of my life, my relationship with it has been far from straight-forward.

The first instrument I started learning to play was the Piano at around the age of 4. My family moved from Aberdeenshire to Derbyshire on 4th July 1999 and my Dad was in the process of setting up a new business so my Mum spent a lot of time at home that summer looking after me, my brother and my two sisters. I started to entertain myself by ‘playing’ the piano, which must have driven Mum insane because she eventually got me lessons.

Although I stuck at the piano through primary school and got my Grade 5, I decided I wanted to try a different instrument, one that I could play in a group. My brother had started learning the violin and was attending the local music centre, so I joined the recorder group. I quickly progressed to playing tenor recorder in the senior recorder ensemble. By this point I had set my mind on learning the clarinet. At the time the music centre was offering free use of an instrument and six free lessons to anyone who wanted to learn french horn or oboe. Mum managed to persuade a 10-year-old me to give oboe a go on the premise that it was similar to a clarinet*.

I had found my instrument (well, one of them). I began playing the oboe around Easter in Year 6 and quickly progressed. I got a distinction in every exam I took and had reached grade 7 by the Easter of Year 10. That was when the migraines started.

Migraines are a massive part of the way EDS impacts my life, and they affect every part of it. From Easter of Year 10 through to the summer after I finished my A levels I was having, on average, 2 or 3 migraines a week. I normally wake up with a migraine, so it’s too for gone for any medication to work. When I have a migraine all I can do is hide in my bed in a dark, quiet room and hope it goes away quickly, though even after it had I would have a headache for at least another day. This meant I missed days of practice as I can’t play when I have a migraine, and playing whilst I have the residual headache only makes it worse. Because of this I eventually had to step down from playing principle oboe for the North East Derbyshire Youth Orchestra. Luckily, I was still able to play with the County Youth Wind Band and had the (amazing!!!) opportunity of playing with the European Youth Orchestra of Darmstadt in 2012.

Playing Music has always been my escape from stress, the thing I enjoy doing the most, so having to massively cut down the amount I was playing made an already difficult period of my life much worse. As my physical health declined I became quite badly depressed and playing music was one of the few things helping me cope, so the fact that it seemed like I was losing that too sent my mental health on a downward spiral. I began hiding in my room, not wanting to get up or do anything even when I didn’t have a migraine. Luckily, my parents are amazing and noticed. They got me help and I realised that I needed to find a way to keep myself engaged in creating music. I began experimenting with other instruments, trying to see if there was one that I would enjoy playing as much as the oboe but without causing my after-migraine headaches to get worse. This is how I ended up teaching myself saxophone. I discovered that Mum had a tenor sax lying around (for fellow my saxophonists: it was a Selmer Mark VI!!!) and would cheer myself up by teaching myself to play. Again, I progressed quickly and soon reached grade 7/8 standard, though to be fair I didn’t have much else I could do. I also found that, on days when I couldn’t play at all, composing was a great way of engaging myself with music.

On the days I didn’t have a migraine or a residual headache I would work on my Grade 8 oboe pieces. It wasn’t until two years after I got my Grade 7 that I had my Grade 8 exam. You’ll never guess what happened on the day… I had a migraine. I still went, though I don’t really remember it, and I managed to get a merit, which I’m incredibly proud of now. But at the time it was very disappointing not to get another distinction, considering how much I’d put into preparing for it. It really knocked my confidence; I wanted to study at a conservatoire and I was starting to think that my migraines (I didn’t know it was EDS at this point) would stop me getting there.

Although my migraines eventually settled down and I only get them once a month now, EDS still affects my playing. Unfortunately I now know that I will probably never be able to perform at the level that I once did, and I definitely won’t be able to make a living out of it. It took me a long time to become OK with this, but I am. My next post (Life as a Musician with EDS Part 2) will take you through my journey from doing my Grade 8 during one of the worst times in my life, to where I am now, starting to get to grips with managing being a musician with EDS.

*This is slightly ironic because people thinking this is now one of my pet peeves- Yes, they may both be made of dark wood with silver keys but clarinet and oboe are VERY different, I promise!

*As May is EDS Awareness Month I writing a daily blog about my life with EDS, check it out here *

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Call for Submissions now Closed

Our call for submissions closed on 1st May. Thank you to everyone who submitted an abstract. We have been overwhelmed with the response to this call for contributions. The peer-review team have their work cut out for them!

Whilst you’re waiting for the final event programme to be determined, why not book your place at the event? We can assure you that, if you have an interest in music and/or disability studies, you’re not going to want to miss this event! Click here to book your place: https://store.leeds.ac.uk/product-catalogue/school-of-music/conference-events/cripping-the-muse-a-2day-summit-event-exploring-the-interfaces-between-music-disability-studies

The cost of attending the event is as follows:

Day One (training event) 

Student/Unwaged: Free

Waged/Organisation: £20

Personal Assistant Ticket (if required): Free

Day Two (conference event) 

Student/Unwaged: £20

Waged/Organisation: £40

Personal Assistant Ticket (if required): Free

Both Days (training & conference) 

Student/Unwaged: £20

Waged/Organisation: £60

Personal Assistant Ticket (if required): Free

A travel bursary scheme will also be available for those with the greatest need (details of this will be announced shortly).

If you have any specific access requirements and are concerned about being able to access the event please do not hesitate to email our Accessibility Officer, Gillian Loomes, who will be happy to assist with any queries you may have. Please contact Gillian via email at lwgl@leeds.ac.uk or via Twitter Direct Messaging @LoomesGill.

We look forward to seeing you there!

 

A close-up photo of a table holding a large number of white lanyards. The lanyards have the 'University of Leeds' logo printed on them in dark green.
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Booking now open!

** Amendment 04.07.2018 – Booking for this event is now closed **

We are delighted to announce that booking for ‘Cripping the Muse’ is now open.

Places at this event are limited so please do book now to avoid missing out. Click here to be taken to the University of Leeds Booking System where you will be able to book tickets.

The cost of attending the event is as follows:

Day One (training event) 

Student/Unwaged: Free

Waged/Organisation: £20

Personal Assistant Ticket (if required): Free

Day Two (conference event) 

Student/Unwaged: £20

Waged/Organisation: £40

Personal Assistant Ticket (if required): Free

Both Days (training & conference) 

Student/Unwaged: £20

Waged/Organisation: £60

Personal Assistant Ticket (if required): Free

A travel bursary scheme will also be available for those with the greatest need (details of this will be announced shortly).

If you have any specific access requirements and are concerned about being able to access the event please do not hesitate to email our Accessibility Officer, Gillian Loomes, who will be happy to assist with any queries you may have. Please contact Gillian via email at lwgl@leeds.ac.uk or via Twitter Direct Messaging @LoomesGill.

We look forward to seeing you there!

 

 

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We All Make Music – A Universal Call for Action

Usually, if you tell me that an event involves a 4am start, 5 hours on a Virgin East Coast Service train and 2 journeys on the London Underground at rush-hour I’d be more than a little inclined to stay in Leeds and avidly follow the conference hashtag on Twitter.

Not this event. I wouldn’t have missed Drake Music’s We All Make Music festival for the world.

If you haven’t heard of Drake Music I urge you to put your reading of this blog post on hold and check out their website immediately (although please do return once you’re done!) Experts in inclusive music-making in education, pioneers of assistive music technology and one of the sector-leaders in accessible instrument design, their remit is impressive and far-reaching. They’ve been in the game for over 20 years and, during this time, have gone on quite the journey as an organisation. As their mini ‘We All Make Music’ guide explains:

“For many years our team was made up largely of non-disabled practitioners. In other words, we were programming and delivering music-making opportunities FOR Disabled people. We recognised that there was a need to evolve a more collaborative approach. We needed to be programming and delivering music-making opportunities WITH, ALONGSIDE and BY Disabled people. This brings the idea of Equality to our work on inclusion. We value and celebrate this coming together; Disabled and non-disabled practitioners making music and change together, sharing different expertise, experiences, skill and talent.”

(Drake Music, We All Make Music 2018 Guide, p.1)

This was the impetus for the We All Make Music event. Marketed as a ‘Music Education Festival’ and forming part of Drake Music’s Think 2020 programme, this one-day un-conference brought together practitioners from across the music education sector. These attendees were treated to a range of creative, hands-on, accessible music workshops and, perhaps most relevant to Cripping the Muse, stimulating debate and discussion on what the future of inclusive music education should look like.

After a rousing welcome from Carien Meijer (CEO of Drake Music) and other members of the Drake team, John Kelly took to the stage to perform a protest song which was specially commissioned for the event. Again, if you’ve not heard of John before I cannot urge you too strongly to follow his work (you can find him on Twitter @rockinpaddy). As the room echoed with his evocative chorus – ‘We don’t fit in a box. Let my music speak for me’ – I think we all knew that this event was the start (or perhaps I should say the continuation?) of something exciting.

As the day progressed this feeling only grew. For me, last Friday’s event was the first time I’ve ever felt truly certain that I am part of a wider movement. For years a handful of music organisations have been leading the way in developing and sharing inclusive practice. What they did last Friday was to invite us all to stand with them; to come together in our shared interest to make the music education sector fully inclusive. Matt Griffiths, CEO of Youth Music, summarised this beautifully as he presented his concluding thoughts to the audience at the end of the day:

“The language of inclusion is back on the table. We have a massive opportunity over the next 4 years to get this work scalable. We’re not a special interest group. We’re not a cottage industry. There has been a lot of talk today about this being a ‘movement’ and I support that whole-heartedly. However, to effect real change this movement needs to be organised, with precise clarity of purpose, strategies and activities to create change. This applies to all of us. Concerted action has to start now.”

(Matt Griffiths, CEO of Youth Music)

As I sat on the train back to Leeds, these words circulated in my mind. Matt was right. This movement does need to be organised. I was left wondering how researchers fit into this. Evidence is powerful, but for it to have real, lasting impact on the landscape of inclusive music education (and disability and the arts more boradly) it needs to originate from an inclusive space. For evidence to lead to inclusion, research has to be inclusive. We have to do what Drake Music did, we have to stop carrying out research FOR disabled people and start carrying out research WITH, ALONGSIDE and BY disabled pepole.

As the train creaked homeward, I smiled as I realised that this was exactly what my fellow conference team and I were trying to achieve with Cripping the Muse. In the same way that We All Make Music formally sought to shift the narrative of the music education sector, Cripping the Muse formally seeks to shift the narrative of research surrounding music and disability.

It therefore seems fitting that the launch date of Cripping the Muse was Saturday 10th March 2018 – the day after We All Make Music. As researchers we have a duty to establish how we might collectively support and contribute to the efforts of the inclusive music movement. How can disabled and non-disabled music researchers alike support the efforts of the sector in making music more inclusive? In addition, how can we make research more accessible so that research findings better reflect the needs, wants and desires of disabled people? Better still, how can we make academia more accessible so that disabled people can shape the research agenda and develop inclusive research practices on their own terms?

Cripping the Muse will act as a starting place for these conversations. By bringing together amateur and professional disabled musicians, the organisations which support them, and those with research interests in disability studies, sociology, psychology, musicology, music education, music psychology, community music and music therapy we will collectively push the research agenda of the field in new directions. Together we will set a new mandate for music and disability research, proving that we too are neither a special interest group nor a cottage industry. We are what should be the norm.

Written by Sarah Mawby (lead organiser of Cripping the Muse)