Alice's Sight Loss Story
My name is Alice Cadman and I have a rare eye condition called Stargardt’s Disease. I am a professional singer and run a primary school music organisation, Sing Education.
I grew up with completely ‘normal’ vision, although when I look back, there were hints at some strange things going on with my vision right back to always wanting the light on as a child, even on a bright summer’s day. I attended regular eye tests, I was an avid reader, could sight-read music fluently as a singer, oboist and pianist and I learnt to drive. It wasn’t until I was aged twenty-two and beginning my first year of a music degree at a conservatoire that I started to notice changes in my vision. My friends had to jump around so that I could find them. I became a nervous driver – lanes suddenly seemed to disappear, and I once only noticed a parked lorry just in time.
Continuing With University
Building a support network
I was soon introduced to a university tutor who supported students with extra learning needs. We got on well and as it happened, she had a very similar eye condition. I know that meeting this tutor so early on in my sight loss journey had a hugely positive impact on the years that followed and on how Stargardt’s impacted my life. Meeting her meant that I was prepared for what was to come.
My new friend and tutor warned me that doctors might suggest I needed time out of university, or that I might be told I should not expect to work. She showed me that somebody could thrive in the working world, despite vision loss. She taught me that life with sight loss was likely to be a challenge, that it wasn’t going to be an easy ride, that the world can be very unfair for people living with disabilities. But alongside that, she taught me that if you’re willing to work hard and to advocate for yourself and others, you could show the world that sight loss is not a barrier.
Eventually, aged twenty-four, I was diagnosed with Stargardt’s Disease and was registered as ‘sight impaired’. Stargardt’s is a juvenile, inherited condition, meaning that it usually comes out in childhood or early adulthood and is passed on genetically. No one in my family had Stargardt’s – or had ever heard of it! Stargardt’s affects your central vision, which is ‘where you look’, but it also deals with fine detail, straight lines and colour.
When I was first diagnosed, I had a small missing patch of vision in my left eye. I remember constantly closing one eye and then the other. What would I do when it showed up in both eyes? I wouldn’t be able to cope then, surely? I shared this worry with another tutor at my music college, who, with family experience of sight loss, encouraged me not to live in fear, thinking every day – “will it be worse tomorrow?”
Getting the right support
University was simultaneously a wonderful and challenging place to deal with the onset of sight loss. On one hand, I had amazing friends and tutors around me who supported and encouraged me.
On the other hand, I had some difficult conversations with people who did not understand what was happening to me. I struggled to get some essential support I needed having not yet learnt the skills to fight for accessibility. I very quickly realised that if I was going to do well in my degree, I was going to have to work extra hard. I was going to have to exercise my right to complain when I wasn’t given support and was going to have to learn to be organised!
Adapting to a new normal
First eye hospital appointment
I went for an optician’s appointment, expecting to come out with a lovely pair of glasses. But the optician spotted something strange and gave me a referral. Fast forward a few months and I received a letter for an appointment at a genetic clinic. I was confused – no one in my family has a major problem with their eyes, I thought – ‘it must be a mistake!’
At the appointment, they did some tests and diagnosed me with macular dystrophy.
My memory of the diagnosis is a little vague - I wasn’t prepared for it, I wasn’t expecting them to tell me that something was seriously wrong with my sight. Had I caused it somehow? Aside from giving up driving straight away, I carried on living as I had before, with little knowledge of the condition and not yet ready to seek help. It was only as I started to tell friends and family about it and as I began to discuss my needs at university, that I realised this might have quite an impact on my life.
Gradual deterioration in my central vision
I led a full student life; studying, teaching singing, piano and classroom music and working as a waiter at parties and bars. Towards the end of my degree, I founded Sing Education, with my (now) husband, and a friend. By the time I graduated, my vision had deteriorated quite a bit, leaving me with a large blank patch in the middle of both eyes and flashing white and green lights over the top.
Relying on God
My Christian faith sustained me through this time and continues to be my rock. I had a loving church community around me who built me up, alongside the support of my husband, close friends and family.
Using my experience to help others
I believed that God would use my visual impairment to help others. This seemed like an unlikely dream at the time, however, I eventually reached a stage where Stargardt’s was no longer a negative thing in my life. Being visually impaired was something I had come to like about myself.
Good things coming out of it all
I found that opportunities related to sight loss started coming my way: I received some funding grants and met many wonderful people.
I now teach singing to a young girl who is blind; I’ve been involved in a project with The Amber Trust to empower other music teachers to teach children who are blind or partially sighted; I’ve sung in The Queen’s Gallery, Buckingham Palace at an art event for visually impaired people; I’ve led sight loss awareness school assemblies; and I run an Instagram account, @life_as_a_vip, to raise awareness of visual impairment.
Are you a VIP?
Encouragements for people dealing with sight loss and visual impairment.