My full life as a blind man

I spent the next few years working in IT. South African public transport was erratic, I would hitch-hike if there were no buses. Colleagues would offer to fetch me, usually turning up late. I decided I could not live where I could not lead an independent life. Fortunately I was invited to work in the UK.

I joined the RP Society, now RetinaUK and built them a website which I ran for 15 years. I learned that even though I could see and do everything, apart from drive, no-one could tell me what the future held. I knew that RP could lead to blindness.

That was a very scary prospect to be facing in my 20s when I was supposed to be thinking about life ahead of me.

Being a single Jewish man new to London I was constantly set up on blind dates — excuse the pun! My first lesson in bias came when someone didn’t want to meet me after hearing about my eyes. From then on the first thing I told any date was about RP. This was a good lesson in being bold: RP is just part of what makes me who I am.

The best and last such date was set up as a friendship. I was reluctant, as was Annie, but we met for coffee at her flat. We got off to a good start with Annie shrugging a “so what” at learning of my RP and then making me, a coffee snob, a great cup of coffee. Twenty-three years later we still have much to talk about.

RP starts with losing central or peripheral vision or, as in my case, the ring in between. Like looking through a bagel: you can see through the centre and around the edge but there is something in the way between that. I remember standing on Putney Bridge trying to figure out where the tunnel was that people were walking through. I finally realised it was my area of blindness that they were disappearing into.

By 1998 my vision had deteriorated further and, though I could see a little, I was officially registered blind. What felt like an awful event was a really important step. Another life-changing moment was in 2006 when I used a white cane for the first time. I went from being that rude man who bumped into people to being someone for whom people should get out of the way or even offer help. Walking stopped being so stressful and scary — an amazing moment.

Travel is a great passion. Annie and I have had many adventures, from China, Mongolia and Tibet to travelling the Trans-Siberian railway to Irkutsk and Lake Baikal.

We spent 388 days travelling from Antarctica to LA, mostly by bus, taking in the vastness of Antarctica along with its characterful penguins, the mysteries of Easter Island and Machu Picchu and the wonders of Galapagos. I could still continue with my passion of photography, moving from my trusty Canon to a large screen digital camera.

In 2014 everything changed when, in Havana, I took out my camera to take a photo and could not see the screen. That was devastating. It was yet another step in my vision journey but it would not stop us from travelling. In 2016 I completed a journey I am immensely proud of: we climbed Mount Kilimanjaro to celebrate my 50th birthday and raise funds for RP research. Standing on the summit, watching the sunrise, even with the last remains of my peripheral vision, was incredible. Climbing down was one of the most difficult and exhausting things I have ever done. I have no depth perception so my guide had to tell me where to put my feet every step of the way.

I’ve had to learn the hard lessons of how to cope with being a blind man. My career went well until my eyesight worsened. Despite using screen readers, people assume that with my vision loss went my ability to carry out my role with the same efficiency I had shown in the past.

I’m always trying to improve awareness of accessibility and ability. Working with Richard Verber of the United Synagogue to ensure their newsletter is accessible to me and people with other impairments has been positive and successful. It shows how “attitude is everything” and where people are receptive to learning they can make a positive difference to people’s lives.

Without being able to read, the challenge in shul is about listening and praying. As I don’t know the services all by heart it is very special when someone offers to read the silent Amidah out loud for me to hear or when a man nearby enunciates so beautifully and clearly that I can partake and he becomes aware only when I thank him. The fantastic way the US, rabbis and communities have embraced technology during the pandemic has made so much more available online, allowing me to participate.

World Sight Day, on Thursday October 8, draws attention to blindness and visual impairment. This year’s theme is Hope In Sight. Being blind is very tough and I can never turn it off. I hope that scientists will find a treatment for RP but know I can’t sit around and wait for them. I hope sighted people will use their vision positively, offering help to a blind person without fear of being rebuffed. Receiving a “no thanks” shouldn’t put you off helping the next blind person. Thank you to all of you who do this.