“It’s not about what you can’t do, but what you can do that matters”

From working as a volunteer football coach at one of the Premier League’s top clubs to advising ministers at the heart of Government, Jonathan has never let Stargardt get in the way of his varied career.

In fact, he is thankful for the opportunities he has had in his life while living with the rare, genetic eye condition.

The ‘golden thread’ Jonathan has lived by came from his time at a special needs boarding school for the blind and visually-impaired where his house master’s motto was “It’s not about what you can’t do, but what you can do that matters.”

Jonathan, 57, said: “That has shaped my outlook on overcoming the various challenges I face as a visually-impaired person whether it’s at home, on the football pitch or in the workplace – I’ve played to my strengths and not worried too much about my weaknesses.”

“That has been the golden thread throughout my life. I’ve not been glass half full and glass half empty but it means I have sought to find a way around the problem in front of me.”

One of Jonathan’s biggest challenges in life has been accepting that sometimes he needed a little help from his friends. He has adapted to life in the workplace, though that has come with time and experience.

He explained: “As a junior member of staff, I wanted to prove to myself and others that I could perform as well if not even better than my fully-sighted colleagues. I was very independent and didn’t like asking for help, so I went to extraordinary lengths to minimise the risk of not being able to do various tasks that often involved working very long hours and at weekends. Looking back, that was a mistake and I paid the price for it later on when I had to take time off work due to physical and mental exhaustion.”

That was a major turning point for Jonathan and since then he has been on a mission to make sure others don’t make the same mistakes by mentoring and coaching staff with disabilities, as well as speaking at various internal and external leadership events on his experiences.

Jonathan said: “My biggest challenge is not being able to see and recognise people. I have had a lot of help with phones, computers and I have specialist software coming out of my ears. I also have a personal assistant to help me not only run my office but also to keep me alive when I’m outside!”

“One of my biggest challenges is seeing, let alone interpreting, non-verbal communication. I’m reliably informed that people who don’t know me sometimes think I’m either deliberately ignoring them or worse still just very unsociable! Generally, I’d like to think that neither are true, but combine this with also not wanting to tell anyone I couldn’t see and it was a recipe for disaster when it came to building effective relationships with others!   

“I do remember seeing a lot better as a child. I remember the spellings on the blackboard, seeing people’s faces in school but I spent most of my education and certainly all of my working life with this condition.”

Talking about a treatment for Stargardt, Jonathan said he is unsure if he would have treatment should anything become available.

He said: “People often ask me, if there was a cure for your condition, would you have the treatment? Most people would say yes, but actually I would need to think about that carefully. I say that because I have been successful in life because of my condition. It’s enabled me to develop and adapt skills and abilities which I wouldn’t have done so if I was fuly sighted.

“I am who I am because of this condition and of course I’d like to see better again but would I be the same person? It’s an interesting question and there are issues around that.”

However, Jonathan remains hopeful for a Stargardt treatment even if he may not choose to benefit from it himself.

“I think in my lifetime, we will make some more big breakthroughs,” he said. “With all the developments with transplants and stem-cell research, it can’t be long before we deal with Stargardt and other sight loss conditions, so I’m glass half full in this respect.”