It was over the dining-room table that my dad recently revealed, what was to me, a surprising statistic; only about 9% of disabled children attend special schools according to data collected by the Department of Education. If I were still a teenager, my first thought would’ve been: “Well, where are the other 91%? I’ve never met another disabled child at school.” But looking back, I think the answer is relatively simple; no one notices us. We get on with the difficulties of life uncomplainingly and, for the most part, pretty successfully, so we simply blend in with our able-bodied classmates.
I suppose this is a compliment, albeit, in my experience, a somewhat condescending one. I can’t say how many times I’ve heard variations of the phrase: “Well done, for getting on with it,” and I thought, I guess rather uncharitably: “What else am supposed to do?” It’s not that I don’t appreciate the sentiment, but it just appears back-handed. I have no choice in the matter, so I have to find ways around the problems I face. When I can’t help but rely on other people for some things – changing my bedsheets, for example – the things I know I can do, like taking my shopping to my car, take on an extra significance, and so I’m determined to do them myself. (Having said that, if a hot guy offered to carry my shopping, I wouldn’t say no.)
Anyway, I digress. The problem with just “getting on” with things is that teachers don’t always pick up on our difficulties. We should expect teachers to be informed about a child with special needs in their class but, this doesn’t always happen, as I discovered first-hand. When I entered secondary school, I found that not all of my teachers knew about my cerebral palsy. This was alright as long as we weren’t doing any two-handed activities, but as soon as we were…It was sometimes several weeks before a teacher became aware of my difficulties. Eventually, I just assumed that a new teacher wouldn’t know about my disability, so I ended up dreading lessons with teachers I didn’t know.
Music is one of those subjects where it is particularly important to know of a child’s disability, but, weirdly, visiting instrumental teachers are not often told about such children in advance. Following Dad’s revelations, my journalist’s brain kicked in, and I decided to discover how those disabled children in mainstream schools were coping in music lessons. And so, I spoke to Professor Martin Fautley, Professor of Education at Birmingham City University. He told me that some schools cite GDPR restrictions as reasons for failing to inform instrumental teachers of any disabled children in their class. This obviously causes problems. Martin explained it to me:
“If you’re going to turn up with a boot-full of the guitars, for example, and there’s a kid who only has the use of one arm, that might be quite good to know. Otherwise, there’s an embarrassing first lesson where the teacher thinks: “I had no idea you were in the class. I’m not quite sure what you can do.”
But there’s another problem. Even if the teacher knows about the child; it’s not easy to find a solution.
“First of all, you’ve got to know about it, then you’ve got to be able to do something about it, and then the thing which you wish to be able to do something about has to be available. So, for example, if [a teacher has] a child for whom OHMI would be a suitable organisation to approach, but they don’t know that OHMI exists, then they’re not going to be able to approach OHMI. It’s a vicious circle,” said Martin.
And then there’s the cost:
“Even if they do know OHMI exists and they want, say, a one-handed recorder, well, they are still a considerable amount of money. A specially-adapted plastic recorder could still cost over a hundred pounds. And they’re not available off the shelf.”
As a result, so many disabled children in mainstream schools are left out, and sadly nobody’s quite sure what to do about it. But all you budding musicians shouldn’t despair yet: research, PR stuff and the badgering of important people are going on, so it might not be long before this “vicious circle” is broken. And maybe, it’s worthwhile to own your disability – people will sit up and listen (and perhaps a good-looking chap/girl will offer to carry your shopping!)
The riots against police brutality in the US have got me thinking about the human need for friendship. I admit this may seem like a massive leap to make; after all, going down to the pub with a friend is a far cry from a potentially violent protest. But, for me, it emphasises the desire all humans have for contact with others who have similar experiences.
The killing of George Floyd and Brionna Taylor – the most famous cases this year – has brought the Black Lives Matter (BLM) movement into the headlines and highlighted ongoing racial prejudice. It has united thousands, if not millions, of people across the world who empathise with or who may have experienced, directly or indirectly, discrimination by the police merely for the colour of their skin.
BLM isn't alone. Pride Month brings together millions of LGBTQ+ people in worldwide events where they can celebrate their sexuality and gender identity, share their experiences, and support others. These types of unifying groups are even found at a local level: think of mother and baby groups or local places of worship.
However, such groups for disabled people are much harder to find. That isn't to say they aren't out there, but they're often small or less well advertised. As a result, disabled children, and maybe even adults, may never know another person with similar difficulties and, as a result, feel lonely and isolated. A 2019 study by the Office for National Statistics reported that disabled people were four times more likely to feel isolated "often or always."
I didn't meet another hemiplegic person until I was in my early teens. (Admittedly, I went to a nursery with other disabled children, but since I was only two or three at the time, I have only the vaguest memories). Throughout my school years, I struggled with the knowledge that I was the only disabled child in attendance. Some of my teachers were left floundering because they had never considered the difficulties their lessons faced to a disabled child. Their solutions to activities I couldn't do (e.g. hockey, netball and music)? I was given permission not to do them. Ok…what am I going to do in the meantime? Homework, obviously! I was left alone, feeling ignored and bored witless. It would definitely have been comforting to know that I wasn't the only one out there battling a two-handed world.
Yet I feel comforted knowing that disabled children do not need to experience this feeling. Through OHMI's incredible work (I'm allowed to be biased) many children have made friends with others who really understand what it's like to live with a disability. And through the OHMI Music-Makers scheme, they can enjoy making music with others – something that might not be available to them otherwise.
OHMI isn't the only organisation connecting together families with disabled children. The charity Reach, which focuses on helping children with upper-limb differences, provides a supportive community for disabled children and their parents.
I recently spoke to the chair, Clare Salters, who told me:
"The business about being the only one in your school with a different hand or the only person you ever see with a little arm can be very isolating. Being together with other children who look the same, and don't stare or ask questions, is so empowering. That sense of being comfortable in your own skin and being accepted for who you are is so important. Reach provides that environment for children at a formative age when they are learning to do things that are logistically more complicated because they've got an upper limb difference. They can learn from other children how to do the things that their two-handed parents don't know how to teach them."
Parents and non-professional carers can also benefit from groups for disabled people. I'm not a parent myself, but I did ask my dad and Clare about the experiences of parents with disabled children. My dad described the isolation he and my mum felt during my childhood, and I wonder whether having such a support network would have helped them.
As Clare said to me: "[Reach] also provides a support network for parents. Until you see children getting along absolutely fine with an upper limb difference, of course, you're going to worry because we're all conditioned to believe that we need all our digits and everything to work in order to have a fulfilling life. But, in fact, when you see Reach kids in action, you realise nothing gets in their way, and they really do live their lives without limits."
Clare's comments ring true. As a child, I would've loved to talk to someone who really understood how difficult it is to dress with one hand (just think about it), tie my hair back and even open a crisp packet. Today, I know I'm not alone, and so, for those who are struggling, I say: we are out there, and we're willing to help; it just may take a bit of hunting.
On the top of one of my bookshelves is a "Kindness Calendar" - a calendar with a nice little piece of advice for each month on being kind to yourself and others. In August, the lovely people who designed the calendar wrote:
"It's possible to grow kindness, but every good gardener will tell you: You will need to nurture it, tend to it, weed out the harmful stuff, be prepared for failures and TAKE TIME TO SIT AND ENJOY IT."
And I think I can implement this advice in other areas of my lives (As the well-worn phrase goes: "practice makes perfect" - an irritant to teenagers everywhere!).
With this in mind, I have started to take a more “nurturing” approach to my job prospects. As a little-known journalist with few contacts, getting work has proven difficult; thus, I have turned to the dangers of the Internet and social media to get my name out there. But I’m aware this will take time and effort on my part and will not produce immediate results. Still, I am determined, so: my first step - creating a website. It's not published yet, but I'll be sure to post a link on the blog page and as many other platforms as possible. My second stage of attack – taking a more active role on social media.
I know all too well how cruel and unforgiving social media can be, and I'll admit to some anxiety over the thought. Yet, it is one of the quickest and most effective ways of promoting yourself. A quick Google search came up with a survey done by Hootsuite and We Are Social - two sites that help manage social media connections. According to their research:
I'm aware too that I must now prepare myself for possible negative comments. (I'm not the most thick-skinned of people). But, as the "Kindness Calendar" credo puts it: I must weed out the harmful stuff and accept that there will be some failures. In other words, I should not become too downhearted by upsetting comments or lack of job offers.
All this has also made me consider the work and practice that musicians - disabled or not - put into learning their craft. I remember the time I put into my singing lessons and can still hear my parents reminding my sister to do her piano practice. I also think of those musicians I've already talked to, like David Nabb, Jenni Bevis-Lacey and Liz Eaton. All of them have had to relearn how to play their instruments or learn new ones. David had a new saxophone designed for him; Jenni had to relearn the fingering on her flute, and Liz learnt a whole new instrument, following her stroke. But through hard work and a bit of trial and error, they've become good musicians who we can enjoy play (I've heard David and he's excellent).
And what these musicians have shown me is that I can't give up; it's alright to make mistakes, if that is what they are, and finally, that I should enjoy the progress I've made.
As the Australian motivational speaker, Susan Powter says: “Laziness doesn’t fly. It’s all in the practice. It does take work and it ain’t easy – but man, the rewards!”
In my April post, I wrote about the impact of the coronavirus on my life and the music industry. 2020 has been a year of great upheaval. Though lockdown is easing in many parts of Britain, we now wait to see if, and when, the second wave of COVID will strike. I’m still job-hunting at a time when people are continuing to be laid off and, in journalism at least, jobs are becoming rarer. It may be necessary for me to freelance for a while, something new for me to consider. And perhaps self-employment will suit me well: the freedom to work in my own space; to my own schedule and write about the topics that really interest me all have their appeal. Until now, I’ve always considered a job to be synonymous with employment, so the possibility of freelancing is significant. However, there have been some minor changes in my life too. My little sister has dyed her hair “strawberry-and-cream” – the left half of her hair is a gentle pink while the right is bleach-blonde – and I’ve started up a new exercise regime.
In the past, I’ve struggled to find a form of exercise I can do without encountering too many physical difficulties. Some sports (hockey, for example) require the use of two highly dexterous hands, others (gymnastics) demand a high level of balance – something I’ll never have. Some, I just find boring (running). One of the few types I do enjoy is dance, though some of the moves I’ve found very difficult. The online dance workout programme, Body Groove, is excellent because there is no hard and fast way to complete the steps. The instructor gives you a few simple moves, which can be adapted any way you want. You can make them complicated or straightforward, go backwards or forwards, it doesn’t matter. So, I’ve been able to modify the steps to fit my own ability.
I mentioned previously (May, I think) that music is an adaptable art; an activity that can be explored and altered to fit anyone’s ability. As a result, it is open to so many different techniques, styles and instruments. Liz Eaton was once a violinist but found she was unable to play following a stroke 24 years ago. Determined to continue making music, she set off to find an instrument she could play. The list of instruments she tried is impressive, ranging from drums to keyboard to recorder. When I first asked what she played her answer was “well, that’s the question!”
When Liz told me the list, my first thought was “gosh, that must be expensive?”, though she did say that it was not too money-draining.
At the cheaper end of the spectrum, she said the cost was similar to a traditional instrument: “about £10 - £100”. However, she did point out that there are some instruments which you would need to be very sure about wanting to learn. The one-handed clarinet, made by instrument-maker Peter Worrell, costs £6,000. On the plus side, it is one of the best instruments in the world. (It is also a previous winner of the OHMI Competition which, of course, makes it even better!)
Her struggles have not affected her outlook on music-making. In fact, she told me:
“I like trying different instruments as a beginner. It might have made quite a difference if I could have had easy access to the hire of the one-handed instruments early on when I had the stroke. I remember playing the drum badly early on, possibly because my brain had lost its musical ability. It might have put me off musical instruments.”
Liz’s experience has shown me that change can be exciting. Her stroke meant she started to try out new instruments and styles of music-making – something she may otherwise never have done. So, while I’m bored stiff of waiting in line outside my doctor’s surgery for half-an-hour just to pick up my prescription, I shall take this opportunity to think of new things to try. I may discover something I really enjoy!
This month I’m celebrating – no, it’s not my birthday, but the first time I have seen my partner in the flesh – so to speak – since March. I’m pleased to report that he is alive and well, and still able to make a perfect cup of tea.
I’m also able to say that I am finally able to tie my hair back with one hand. Admittedly, it is very messy, but I don’t care – I’ve done it!
Since I moved out of my parents’ house, I’ve sported a pixie cut being unable to look after longer hair by myself. After I moved in with my partner, I decided to grow my hair, determined to learn how to style it. And I have succeeded.
This is just one of the many things I have achieved over my lifetime. Since I was a small child, teachers, doctors and other health professionals have questioned my ability to do many of the activities that I have accomplished. These included crawling, walking, swimming, cycling and skipping – though it’s not always perfect. I do walk with a toe strike on my left foot and am inclined to swim diagonally!
Of course, I am generalising here. There were always those who were more encouraging. My Year Nine PE teacher was one of the best; she was convinced that I could participate in all the sports she taught…and I could! Though sceptical and somewhat reluctant at the time, I did join in with basketball and the track and field events – no doubt there were more, but those are the ones that remember most clearly. (Miss Vann, if you ever read this blog, I want to thank you from the bottom of my heart).
Sport is one of those areas in life that many disabled people find difficult. But disabled sport has received so much attention and funding that many disabled people have found that they are able to participate fully in sporting events – the Paralympics, for example.
Sadly, music does not receive the same attention and is an area in which the disabled are frequently left out. As a result, the possibilities of disabled music-making are over-looked and under-funded. Whether this is because adapted instruments are too expensive or are considered too difficult to make and impossible to learn, I don’t know. But what I do know is that there are those out there who have fought in order to make music.
James Rose is the founding conductor of BSO Resound, part of the Bournemouth Symphony Orchestra and the world’s first disabled-led ensemble. This six-person group is made up entirely of disabled musicians and they’re pretty good – they have performed at the Proms!
James has cerebral palsy, specifically quadriplegia meaning all four limbs are affected and so is unable to hold a traditional conductor’s baton. Instead, he uses his head via a baton attached to the side of his glasses.
As might be expected his technique has “rais[ed] a few eyebrows” ( he says), but it doesn’t matter. He is making music! He said to me:
“Proving my ability is something I always do…it’s that challenge of proving people wrong and to ‘overcome barriers’ which motivates me to press on.”
His success and upbeat attitude remind me that physical difficulties do not have to be a barrier to one’s goals but can be a positive force. So, I shall end this month’s post by saying “Whatever my next challenge, just you watch me?”
Until about a year ago, I was unable to play video games as the controllers are designed for two hands. Instead, I just watched others play and wished I could do the same. Then, my boyfriend discovered that the techies at Xbox had created a smart little gadget for people unable to use a traditional controller. What followed was an impulsive decision to spend all my birthday money on an Xbox and this Adaptive Controller – a decision I do not regret. The controller is something akin to a switchboard into which you can attach your own buttons, joysticks or whatever. In essence, you can create a personalised model - I use mine as a replacement for the left-hand side of a traditional controller. As a result, in the past year, I have become, if not a good gamer, then at least one that does not die every twenty seconds. I have also discovered that my controller is an excellent conversation starter!
As a little girl, I hated wearing my splints or using specialised equipment because it drew attention to my disability. Since entering adulthood, my outlook on this has changed. In fact, I have concluded that being disabled is far more interesting. Apologies to all able-bodied folk out there, but being normal is boring!
Jenni Bevis-Lacey suffers from rheumatoid disease and plays her flute in the community band with the help of a vertical flute head and her canine partner, LBE (pronounced Elbie).
"The first day I went in, I didn't really know anybody. I turned up in my wheelchair with my dog, and they went 'um...can we help you?' and I went 'no, that's alright, I play, the dog doesn't!' They laughed, and that broke the ice a bit."
LBE has not only proven himself to be a talking point and a means for Jenni to connect with the other band members but has become a fully-fledged member of the band in his own right. Flyers now advertise a "full concert band plus one canine partner!" And it seems he may be an aspiring saxophonist. Jenni says he likes to go to sleep next to the saxophones! He even provides the band with sometimes unwanted help. In the middle of a concert, he once tried to hand a trumpeter back the sheets of music she had deliberately placed on the floor.
Jenni also told me the story behind her vertical flute head:
"I started playing in the band but realised quite quickly that I was not going to be able to play properly. My shoulders are shot from rheumatoid arthritis, so holding the flute up was really difficult, and I was holding it wrongly. It was putting a lot of pressure on my shoulder. So, I Googled, and I saw that you get these vertical flute heads. I thought it might allow me to play for longer."
Just as the Adaptive Controller did for me, Jenni's flute head has become a conversation starter. Especially for men (sic), she says, who are often interested in the engineering behind it. No doubt, Jenni has spoken with loads more people than she otherwise would have done.
As a dog owner myself, I am well aware of how our canine companions make it easy to make new friends and connect with others. Still, it was not until recently that I realised specialised gadgets could do the same. Humans are social creatures, and thus we all need a circle of friends (especially journalists, how else do you think we get our scoops?). So, if my Adaptive Controller is a way of making acquaintances, I'm using it. After all, there are few advantages to being disabled.
The lockdown continues. I've been job-hunting; binge-watching the Outlander TV series; and searching online for amusing memes about the coronavirus. It's even got to the point where I've stopped reading and started listening to as many ridiculously long audiobooks as I can find. Whoever came up with the idea of Kindles and audiobooks, thank you – they are a godsend.
Paper books can be cumbersome to manoeuvre with one hand, especially the large ones. Hence, I tend to buy ebooks or audiobooks. As a result, I do miss out on the joy of seeing a full bookshelf, visually tracking my progress and that unmistakeable book smell. However, I have resigned myself to this as I would much rather read the story than spend my time sniffing pages!
All this reading (or instead, listening) has got me into something of a philosophical mood, especially on those uniquely human aspects of life. Story-telling is an innate part of human nature, as is music-making. David Nabb, Professor of Music at the University of Nebraska Kearney, said: "I believe that music-making is a fundamental part of the human experience. Music-making is as human as chatting with a friend or falling in love."
And this significant part of our psyche can be traced back to the Stone Age. The earliest confirmed homo sapiens-made musical instrument is a bone flute discovered in Germany, dating from 35,000-40,000 BP (before present). It is even possible that Neanderthals made music. In the nineties, archaeologists discovered what appeared to be a bone flute at a Neanderthal site in Slovenia, dating approximately 43,100 BP. If true, this artefact is the oldest known musical instrument in the world.
Does this mean that the disabled among us have been missing out on an essential part of human existence? To quote David again: "Research tells us that students with disabilities have the same interests in music as their able-bodied peers."
That someone needs to state this outright is poignant, particularly since music is fluid, adaptable and accessible to everyone. Apart from the necessity of playing the right notes at the right time, there is no hard and fast way in which you must make music - David himself plays the saxophone with one hand. "There are people all over the world who are just doing it their own way, in spite of the obstacles - nevertheless it's still music," he said.
From personal experience, and from speaking with other disabled people, I know that some people question why we want to do something we cannot do. To me, this seems obvious: why would we not? That is, I admit, not much of an answer, so instead, I shall quote David's brilliantly simple reply: "Because I'm human."
To me, these three words encapsulate the whole issue. Our bodies may not work in the same way as the majority of the human population, but we are still the same species, with the same instincts and the same history.
Strange times, indeed. The UK has ground to a halt, and toilet paper could become our new currency. I've moved back in with my parents as isolation in the Somerset countryside with our crazy labradoodle seemed preferable to my tiny house. The lease on the house had also just ended, which was another incentive.
And, it is enjoyable waking up to birdsong, watching the lambs in the neighbouring field, and getting my hour's exercise with the dog. Nutritious "Mum food" has been a bonus, and I'm losing weight. To put it mildly, cooking for myself is frustrating with the use of only one-hand and my partner has no culinary expertise, so I'm afraid to say that my diet of takeaway pizza was beginning to show.
However, I have lost my job and found a lack of routine, stressed atmosphere, and separation from my partner deeply unsettling. The result has been stomach aches, itchy skin, and cloistering myself in the sanctuary of the bedroom.
Yet, these feelings gave me the idea for this month's OHMI blog post; the effects of the coronavirus on OHMI's work and music industry.
With the closure of theatres, concert halls and other non-essential spaces where large crowds might congregate, staff, musicians and actors must be worried about money and fearing for their jobs. Large organisations are streaming performances, and individual musicians are posting online, yet, many of these artists are not being paid for their work. I wonder whether these organisations and individuals can overcome such financial loss.
No doubt to the disappointment of many, pop concerts such as Glastonbury, have also been cancelled. I have never been to one myself. The thought of being welly deep in mud, of camping and dodgy showers, has no appeal. I used to be an archaeologist where such amenities were standard, so I have no wish to experience it in my free time. Luckily for me, those days are long gone as I am now a fully qualified, working journalist.
OHMI has suffered its share of difficulties too. Now schools and other music hubs have shut, music lessons have all but stopped. Those that are continuing are done via Skype. And speaking of Skype, all our meetings are now conducted online. As you might imagine, this causes its own problems - broadband speed, video, and audio quality will affect the call. Besides, as any journalist will tell you, there is no replacement for a face-to-face meeting!
But to end on a positive note, we are all well, still here and busy planning for the future.
Welcome readers to the first-ever OHMI blog post and to what I hope will be a long-running and enjoyable blog. I shall admit straight off the bat that I have never written a blog before, and am no expert in the subject of music-making. So, this blog will be as informative to me as it is to you.
The best place to start is, probably, by introducing myself. I am THE Amy who inspired my father, Stephen Hetherington, to form the OHMI Trust. My inability to play a musical instrument at school, due to hemiplegia (cerebral palsy affecting one side of the body), prompted my dad to set up a charity which would create one-handed musical instruments so that other disabled people could enjoy making music.
The charity has been running for nine years now, and we have, indeed, inspired many to create such instruments, including a one-handed recorder, clarinet and even bagpipes through the OHMI Competition. Now, OHMI has set up a teaching programme, called the OHMI Music-Makers, for children to learn these instruments. Now in my twenties, I'm afraid I've missed the boat for this particular programme, but I am so pleased that disabled children are now able to do something I never could. With this in mind, I decided to ask some of these kids (and their parents) about their music-making experiences. I met up with Colin and his son, Sean, who is learning to play the one-handed recorder. Sean has right-sided hemiplegia and has been learning the recorder since he was five. By all accounts, he is pretty good having played in several school concerts and even in a Christmas concert at the village hall where he played the Harry Potter theme tune, one of his favourite pieces. As a fellow Potterhead, I’m impressed!
“Sean has always enjoyed music and he’s actually able to play an instrument where he can get 100% involved. He’s really enjoying playing pieces with other children now too,” said dad, Colin. “So now, playing with the school recorder group where they have to stand on stage in front of a crowd of people – it’s been great for his confidence.”
It would seem that this recorder group is pretty popular too. In Sean’s own words, there are “too many [members] to count,” though this has not put Sean off. He has recorder group friends, who he would not otherwise hang out with.
And this, to me, is what OHMI is all about - not just making music, but making friends and gaining confidence. If anything summed this up for me, it was the smile on Sean’s face along with his assurance that he will continue to play and possibly learn the trumpet one day.
I am the daughter of Stephen Hetherington, founder of the OHMI Trust, and suffer from left hemiplegia (cerebral palsy affecting the left side of the body). I am a professional journalist but have also worked as an archaeologist. In my free time, I enjoy reading, writing and walking the dog.