Last year I took part in an amazing Wellbeing initiative set up by Retina UK. During this time I spent several Friday mornings chatting candidly to an awesome woman who is over 200 miles away from me.
We became good friends during those hours of honesty and vulnerability and I was thrilled when her name appeared in my WhatsApp messages last week. I had left my number with Retina UK and once our course was over, I was hoping to reconnect.
We set up a call and last week over a virtual coffee, I heard my lovely friend’s voice again. We are both married, both mums and both living with Retinitis Pigmentosa. To speak to someone who truly gets it, feels incredible.
Losing your sight is as horrific as it sounds. It’s scary and isolating and in truth, there are times you feel like you are falling into a dark abyss. It’s the big things. The future that you thought you’d have and all the things you can’t or eventually won’t be able to do. It’s the little things. Missing a visual cue, not seeing something or someone outside your field of vision. Appearing clumsy or disinterested when not making the expected level of eye contact. It’s all of it. It’s so tiring pretending to be who you were, whilst trying to learn how to cover the basics; when the goalposts are constantly moving.
My friend fills me with hope. She is out there living her life and doing what most assume she couldn’t. One of those things is that she works full time. The sense of purpose and contribution it gives her is immense and I hope to have that one day too. Something as simple as rejoining the workforce as a visually impaired person, often blows people’s prejudices out of the water.
We spoke about the double edged sword of diversity. Diversity is the buzzword. Every company wants in on that action and to an extent, it’s a great thing. In principle, folk from all walks of life can be considered for a role. The other side of that coin, as a visually impaired person, is not waiting to just be a diversity hire. To be hired to tick a box and/or make the company appear more compassionate and inclusive. We need to earn that opportunity just like anyone else.
Once in the role my friend spoke of the pressure she felt to take on harder tasks or more difficult and complex cases and customers, in an effort to constantly make up for the elements of the job that were not accessible for her to compete herself. I can only imagine the constant additional worry of making a mistake.
Mistakes happen because we are human. It happens to us all and we move on. Is that the same for the visually impaired community? I would be almost paranoid that any mistake I made wouldn’t be seen as par for the course but as a negative consequence of hiring someone visually impaired.
Would any misstep result in a hundred ‘I-told-you-so’s’ echoing round the office?
Accessibility was definitely part of our conversation. Although there are access to work schemes, people often need retraining when trying to return to work. We can’t afford courses, classes or open university, can’t attend night school due to night vision issues and transport often blocks most routes to education as our ability to get anywhere on demand is difficult and most times impossible.
We swapped stories of access to GPs and how difficult that has become. With the NHS 111 service often taking the initial call, you never know where you are going to be sent for care. The assumption that we can all drive and pop anywhere we like at a moment’s notice is another cruel blow to us. Recently my daughter was poorly. Over the course of 7 days, she saw 4 doctors, in 4 different locations, none of which I could have got to alone but people like us, like so many that have chronic diseases and disabilities, we are forgotten. Parts of our society are becoming so difficult to navigate in the relentless pursuit of convenience. Convenient for who?
We are still people. Still awesome, wonderful, funny, kind, compassionate and can still make a real contribution to the world, we just need a little help along the way. I’m so grateful for my new friend. It was so nice to be real. I didn’t have to lie or be brave. We were just two friends chatting over coffee.
I never forget what’s happening to me but during our calls, I’m reminded who I still am. All my strengths and characteristics that make me a good friend, person and colleague are all still there. It’s easy to allow a little known disease with a big name derail your life. I’m so grateful to those who have walked bravely ahead of me in their own journey with Retinitis Pigmentosa and thankful to these amazing people who are holding the doors open for people like me.