Katriona’s story

When I was seven years old at school the teachers noticed that I wasn’t reading the board easily and sent me off to have some eye tests. Nothing obvious showed up so we then went to see an eye specialist. In fact we saw two eye specialists before I was properly diagnosed. The ﬁrst telling my parents that he couldn’t see anything wrong and perhaps I was a hysterical child seeking attention.

As we left his consulting room, my mother pointed across the road to where we were going and noted that I could not read the name on the street. When I was eventually diagnosed about a year later there was always a level of uncertainty, the eye specialist said that he thought it was Stargardt’s disease but it didn’t display the classic symptoms. However, his prognosis was that I would be totally blind by the time I was 21 and that there were certain things in life that would not be possible for me.

I recall him saying that I would never drive – for some reason that stuck in my mind. He also told my parents that I would need to go to a special school for the blind and that it was a very serious condition, focusing on the negatives.

There was no genetic testing in those days and Stargardt’s disease is a rare form of macular dystrophy, so even the eye specialists did not come across it often and could not recognise it or garner the same information that is shared today via the internet.

No one in our family even wore glasses, no one in our extended family for years before had reported any problems with their sight that was similar. We had no experience of Stargardt’s.

I remember my mother weeping after the diagnosis and me feeling a little confused but on the whole I carried on as before. I went to a mainstream school and used magnifying glasses to assist me with reading. My parents tell me that they noticed more situations where I didn’t appear to be able to see things and slowly my vision deteriorated. In my teens I was still just about playing some ball sports with difﬁculty and reading and writing. I adapted to not being able to see, my friends knew about it and although studying became more difﬁcult, life carried on.

I did worry about what would happen in my life and how things would progress. Like any child, the future seemed big and unknown and this was an added level of anxiety for me. My parents encouraged me to continue in mainstream school and I went to university to study law where I gained a 2:1 honours degree in law. I then sat legal qualiﬁcation exams at Nottingham Trent law school using adaptive speech technology and had someone who read text allowed to me in the exams. The law college was surprisingly helpful, in contrast to the experience I had had in education previously which was that very little adjustment was made for me. I had to work very hard and it was slower for me but I was very determined. I gained a distinction in my Legal Practice Course exams. For every job in law, several hundred people apply for the position. It is extremely competitive to get your ﬁrst job and even more difﬁcult with a visual impairment, however I somehow managed to get offers from two different ﬁrms. I remember once attending a USA Macular Society convention as a delicate of the UK Society of Visually Impaired Lawyers.

The diagnosis affects every area of my life, from how I am able to exercise and socialise, the extent to which I can travel around the world, to raising my children and my work life. I have to make adaptations in all these areas and ask for help from others. It affects my independence but there are always ways around obstacles and I have led a fulﬁlled life full of fantastic challenges and achievements. After practising as an intellectual property solicitor in the City of London, I decided that it was not going to be for me for life and my love of music drew me away from my career as a solicitor and towards singing. This had always been a passion of mine. I gained a postgraduate diploma in acting & singing at the prestigious Central School of Speech and Drama and embarked on a career as a jazz singer.

I quickly had a succession of lucky breaks and shows which propelled me into the UK jazz scene and Internationally working with some fantastic musicians, such as the legendary 11 times Grammy award-winner George Benson and The James Taylor Quartet amongst others. I have performed on hundreds of stages with some of the world’s best musicians. My second career as a singer has been very exciting and I have also discovered I am able to compose and write songs. I have recorded ﬁve albums to date. I have also been blessed with two beautiful children who inspire me every day.

I’ve always applied myself whenever I take on a task and I have worked very hard to improve my musicianship, my songwriting and my vocal skills throughout my career. With my visual impairment, I am not able to read music but I am able to play instruments and have found a way of writing music down so that it could be transcribed. The beauty of music is that it is aural, although the work also involves business management, administration, booking & running band members and providing press material, which is all highly visual work and I have required help visually with these things.

In between the homeschooling and the uncertainties of lockdown, I used the time to record my latest album, Blind Passion. I felt it was the right time to acknowledge this part of my life – I hadn’t really highlighted my sight before when presenting myself as a singer. So I decided to record an album celebrating the songs of blind musicians who have inspired millions and who are trailblazers for musicians everywhere. Blind Passion includes songs from Stevie Wonder, Ray Charles, José Feliciano and Diane Schuur as well as some of my own original songs. All the songs on the album have been arranged or written by me and are a mix of jazz, Latin & soul styles. One of the songs, ‘As you see me now’, was kindly contributed by Jools Holland, who I’m delighted to say has given me a very complimentary review. Here’s a link to a short video I recorded of the song. My Blind Passion project is close to my heart and is my own way of raising awareness about sight loss.

It’s fundamentally important to raise awareness of Stargardt’s disease because it is often an unseen disability. The people around you don’t realise that you can’t see and they don’t make allowances for it. It’s surprising how little the public know about sight loss and how they can help someone. A little practical help and consideration can go along way. Even where a disability isn’t hidden and someone is carrying a white stick, I believe people still don’t know how to react to help them most effectively. The more examples there are of celebrities or those in the public eye with Stargardt’s disease, the more aware and informed the public will be.

Throughout my lifetime I have received some form of support for my condition, whether it be magniﬁcation aids, speech software or a support worker to help me in education or at work. Much of this has come from the government as I run a business (as a singer/ performer and vocal coach), although help is not always easy to obtain and navigating ones way through the red tape and forms that need to be ﬁlled in, in order to receive help, can be difﬁcult. I’ve also had a lot of family support throughout the years, especially when I had breast cancer some years ago – a very difﬁcult thing for anyone to cope with, without the added complexities a visual impairment brings.

Research is crucial for the sight loss community. In recent years there has been much scientiﬁc progress in mapping the DNA of the human race and understanding more about which genes lead to which conditions. I was ﬁnally given a formal diagnosis after genetic testing in my thirties – with this scientiﬁc knowledge comes certainty and a level of acceptance. In addition there is incredible stem cell research being conducted which may offer some hope for curing Stargardt’s disease and macular dystrophy in the future. Considering the leaps and bounds that have been made in the past 10 years, who knows what will be possible in the next 10 years. However, with research there is always a requirement for funding and it is essential to raise funds as well as raise awareness.

To family members who have had someone in their family diagnosed with Stargardt’s macular dystrophy, I’d say with your love and support and practical help, you can make their life so much easier. There is no getting around the fact that having a sight loss condition will make life more challenging, more stressful and it can feel like a lonely business at times, but if you are honest, seek help and stay determined, you can achieve what you wish. I don’t believe a lack of vision has to limit you. There are now many charities which support people with sight loss. I was delighted to discover Stargardt’s Connected, a relatively new charity dealing speciﬁcally with this disease and a great community with which to share experiences and help access things. This wasn’t always the case when I was younger and I’m very grateful for charities like this. I feel very privileged to be able to act as an ambassador for Stargardt’s Connected.

Everybody in the music industry has been badly affected by the pandemic, I am no exception. Like many others in entertainment, I have had to transfer my live performances to online and I have been regularly live-streaming over the months of lockdown from my Wimbledon Studio. This has enabled me to reach audiences beyond the UK and my last show had music lovers tuning from several continents. It’s a great way to reach out and feel connected to others, including those in the sight loss community.

For more information about Katriona Taylor, her performances and the Blind Passion album please see www.katrionataylor.com