“There has never been a better time to be disabled” – Karl Schwonik, 2021
It is perhaps an over-romanticised, idealistic viewpoint, but I am a firm believer in the attitude that having low vision cannot stop somebody thriving in what they love to do. Moreover, with technology improving and society gradually becoming better educated and more accepting, that ideal can only grow more real.
I am a professional pianist, composer and musical director living with a degenerative condition called Stargardt’s Macular Dystrophy which restricts my central vision. I cannot read music, sometimes struggle to see the keyboard, and find identifying faces very difficult. Over the years I have developed a multitude of techniques, knacks, workarounds which enable me to carry out my work and navigate the music industry in my own way.
Broadly, the two major areas that enable me to follow a career in music are the enhancement of my aural skills and memory, and making use of technological advancements. Each person’s experience of sight loss and the way that it affects creative and everyday tasks is totally unique to the individual. Two people may have the same condition progressing at the same rate, but develop entirely different ways of working around it perhaps according to living circumstances or other natural skills and inclinations.
Ears, Memory, and Touch
I already had fascinations with music theory, the piano and singing when I started losing my sight aged nine or ten and at that age, the brain is still very adaptable. As it became progressively harder and slower for me to access sheet music even enlarged 5x, it became easier and faster to pick things up by ear and commit to memory. Now I play all my piano gigs and theatre shows from memory and can take requests provided I have heard the song a handful of times. I am always learning new music by ear, and I keep certain other aural skills up like practising transposition and improvisation in each of the twelve keys.
I play the piano with my hands in constant contact with the keys, so I am feeling my way across the keys with some fingers even if they are not depressing notes. This is a near-unconscious process which has developed organically over the years. The orientation of the white and black notes on a piano makes it easy to navigate the instrument by feel once my hands are in position. I have to lean to look more closely at the top and bottom extremes if I need to jump to either end.
This article is not sponsored by Apple, but for me the four Apple devices that I own have transformed the efficiency with which I can create music. The built-in ‘Zoom’ and ‘Speech’ functions in the Accessibility area of iMacs and MacBooks render any external software unnecessary for me. Whether I am working on a score in Sibelius, producing a track in Logic or writing an email, I spend 90% of the time zoomed in to between 20x and 60x size. The field of view is set to move continuously around the screen with my mouse cursor for easy navigation, and the magnification level is on a smooth sliding scale controlled with a simple mouse scroll gesture. I have Siri read any text to me with a quick keyboard shortcut. I touch-type, and I have ‘bump-on’ stickers on the F, J and Enter keys so I can feel my way into position without looking.
On my iPhone, I use ‘VoiceOver’ and ‘Zoom’ to access emails, messages apps and websites on the go. If I can help it, I always favour doing screen-based tasks at a desktop or laptop as typing and reading on the small phone screen is significantly slower and more tiring. I also use the ‘Magnifier’ and the regular camera to photograph and zoom in on signs, labels, menus, bus numbers, departure boards and such like.
If piano-playing without sheet music is comfortable for me, one thing for which I am still finding a workaround is reading lyrics which I find much harder to memorise in bulk. I am often requested songs which I can happily play on the piano but only know a handful of lyrics to. One solution that I have tried is to have the lyrics blown up to 3-4 words on my iPad screen on a stand close to my face, then toggle through the words with a Bluetooth foot-pedal page turner while playing. This isn’t quite gig-ready yet as, a) I would need to produce a huge bank of lyric documents in this specific format, b) I tend to need the screen so close that it makes it harder to sing into the microphone, c) having my face buried in the screen reduces the amount I can interact with an audience, and d) even at max size it is impossible to read beyond a certain speed – ‘Bring Him Home‘ maybe doable but ‘Don’t Stop Me Now‘ is another kettle of fish.
These products are all expensive but there are various ways of receiving governmental and private grants. RNIB and the Macular Society are great places for advice on this.
Building a professional profile and expanding a contact network presents a fresh set of challenges. The good news is that most of this is personal skills which apply regardless of vision loss, but there are certain obstacles. Social media and online presence is a major part of a musician’s profile and in particular Instagram is built to be used exclusively on a phone. I tend to compose my post text and hashtags on a desktop ‘Note’ which will then appear on my phone through iCloud and I copy the text into the Instagram app from there. Also, because stories disappear after a few seconds, I often screenshot a story if I want to read it closely.
One of the most common cliches in this world is “it’s all about who you know” and there is a lot of truth in this. Almost every job I’ve landed is because of a connection or a personal recommendation, and then if you do your job well your get asked back and recommended to others and the web expands. From a V.I. perspective, one of the biggest challenges is recognising people. Some people are good at going along to a networking event or a cast after-party and spotting a high-flying agent or producer across the room whom they recognise from another actor’s birthday last July, and finding subtle ways of joining in the conversation. That kind of smooth interaction can be very difficult when you can’t see who is around and you rely on verbal introductions and people being conveniently positioned to make them for you. In these situations, the only thing to do is be open about your condition and people are often understanding and helpful.
The important thing to remember is that this type of phenomenon is a bit of a myth, much less common than the cliche suggests, and the reality is that if you keep doing your job to the best of your ability, keep expanding and improving your skillsets and try to be a nice person to work with and to chat to, your name will be passed around with a much more meaningful reference than that of a successful ‘schmoozer’.
Visual challenges pop up in all shapes and sizes and the most important soft tools to roll with the punches are to remain positive about the things you can do, be adaptable and inventive in finding new solutions that work for you, and to be confident in explaining your position and how it may even be spun into a compelling USP.
You can hear about other creatives’ experience of low vision on my podcast ‘Legally Blind’ – available on all platforms.