My eyesight condition is called retinitis pigmentosa. It’s a genetic degenerative disease that impacts the retina at the back of the eye. I was diagnosed with the condition at a very early age, when I was just 18 months old. My clever, observant mum noticed I was slightly clumsier than the other kids and took me to Moorfields Eye Hospital where my poor parents received the news that their daughter would probably go blind by the time she was a teenager. I have two children of my own now and have some understanding of how devastating this news must have been. However, both my parents are glass half-full, can-do people and they brought me up with a fighting attitude.
I went to school in Kent and, at the time, the local educational authority had a policy of excluding disabled children from mainstream schools, and my parents were encouraged to seek out a specialist school. I was a social, bright child with, at this stage, some tunnel vision, which meant I could just see things straight in front of me. I was riding bikes, catching balls and roller skating. When my parents went to visit the residential schools, which was all that was available at the time, blindness was considered one of the worst disabilities you could have and so, most of my fellow classmates, had I gone to one of these schools, would have been very severely disabled. It was at this stage that mum and dad started their fight as they believed mainstream school was the best place for me.
At eight years old, I learnt to touch-type. Even though my handwriting was as good as anyone's, it was determined I needed this skill as it was likely I would go blind. So, when all the other kids were handwriting, I had the challenge of learning how to use an electric typewriter. It was a novelty at the beginning but, if you can remember what it's like being eight, all you really want is to be exactly the same as everyone else. There were other things like this throughout my primary education, however, in the main, I was pretty oblivious to the arguments and campaigning my parents had to do on my behalf to keep me in mainstream education. My Headmaster, Mr Latham, was a super chap and also stood alongside my parents in making sure I stayed at his school.
At 11 years old we moved to Hampshire and I started secondary school. Hampshire’s local authority had a policy of inclusion so my parents got to hang up their boxing gloves! However, I was determined not to be treated any differently and forbid my parents from making a big deal out of my eyesight condition. I created lots of coping mechanisms to hide the fact I couldn’t see well; Most of them included being gobby and the class clown. I hid my rubbish ball skills by always pairing up with one of those completely uncoordinated people who only managed to hit a ball if it was with their face which, thankfully, meant I was able to avoid P.E teachers cottoning on. Unsurprisingly, I didn’t do well in my exams. I did however achieve an A in drama which, I guess, showed off how good I had become at being creative and acting.
Since school, I have gone on to have a very successful career. I finally went blind at the age of 27 which, incidentally was the year I got married and started my first business. Ali and I were married for seven years before we decided to have our first child. This was a big decision for us as we had always said we wanted to be double-income, no kids kind of people. Somewhere along the line though the five holidays abroad a year, eating out, and heavy social life just didn’t seem enough. I could probably dedicate another whole blog to what it’s like to be a blind parent and, I have to say, I wasn’t sure we’d made the right decision until Maddy was actually born and we took her home. There were many occasions when my husband would come home from work and find poo on a light switch and wonder how on earth I’d managed to get it there!
In terms of work, the government have an amazing scheme called Access to Work which has always meant I've had a grant towards being able to afford a personal assistant. This was a brilliant gift when I first went blind and, without the help of a PA when my company first started, I feel sure the business would have failed. I have had a number of amazing PAs over the years which has enabled me to enjoy a very full and diverse career. I ran my business, Great Guns Marketing, for 17 years; an award-winning marketing agency, head-officed in Basingstoke. At its peak we employed over 100 people and worked for some of the biggest brands in the UK. I have also been an independent business consultant, advising companies on their marketing strategies. For the last five years I have held the position of Sales and Marketing Director at a family-owned mergers and acquisition company, which is a fantastic job. I am deeply thankful to whichever government minister created the Access to Work scheme, as work is one of the pillars in my life. I love making a difference in the workplace and I enjoy immensely all the amazing people I get to meet, talk to and learn from at work. My life would have been very different had I not had the enjoyment of my career. It very much saddens me that only around 33% of blind people of working age are in jobs.
The picture I am trying to paint for you hopefully helps you understand why I haven’t set aside time to learn how to be independent and use a white stick. I love being with people and so don’t crave that ‘alone time’ that many people do. Quite frankly, when Ali and the kids go out and leave me in the house on my own, usually only half an hour goes by before I pick up the phone to a mate for a chat. Lockdown has been different though. It’s taken away so many distractions and, most importantly, it’s meant I haven’t been able to see all the people I usually do. Don’t get me wrong, I’m not crying in my soup over this. Lockdown hasn’t been awful for us – we are all well, I’m employed and I’ve spent more time with my kids than ever before, which has been wonderful. I just have this huge craving to get out on my own! Do what I want, when I want to do it!
I took the first step last week and emailed Hampshire County Council who have a Sensory Team. This team has been created to assist adults who wish to be more independent. I’ve heard back from someone on the team who asked me some questions, to gather more information so they can allocate the right person to my case. The next step is to do an assessment. I think this means they’ll visit my home and check out where I live. One issue I can foresee is that we don’t have any pavements, so I'm wondering how I'll be able to navigate where I am on the road. It’s pretty muddy at the sides, as the lane runs through woodland, but I suspect there are a load of tricks they’ll be able to teach me.
I hope you’ll enjoy coming on this journey with me. I’m not sure how fast it will be, so you may need to be patient and, if you have any questions or suggestions, leave them in the comments and I’ll do my best to respond.