Why, when a complete stranger helps you across the road, do they think they can ask you about your health? Apparently, GDPR doesn’t apply to good deeds...
Once, at the end of a lengthy tour of Auschwitz concentration camp, an English man turned to me and said, “RP?”
I snapped back “No!”
I was indignant and apparently the man was quite taken back by my reaction. But imagine thinking that I had a common eye disease like Retinitis Pigmentosa! I have a rare exotic eye disease. I believe that if you are going to have an eye disease, who wants something common (even if the rarer diseases are more difficult to diagnose with fewer treatment options and much less research)?
On reflection, it was rather odd that the man in question had followed me around a site of extreme brutality, a death camp where over a million died, wondering about the medical cause of my sight impairment. Did he spare a thought for the tens of thousands of Disabled People murdered by the Nazis?
I remember having lunch with Martin Stevens, former DRUK chair of trustees, and Kamran Mallick, DR UK’s CEO. When we shared our ‘origin stories’ – the causes of our impairments – it was our choice to do so and had no bearing on how we would work together. I work with lots of Disabled People, however I usually don’t have any idea why they identify as Disabled People. Likewise, I have friends who are ‘disabled’ but we usually have more interesting things to talk about and other interests in common.
There is a group of us in the town where I live, who refer to ourselves as ‘Blind ladies who Lunch’. Yes, occasionally we will share ‘tips of the trade’ - workarounds for the barriers we encounter, we complain about ophthalmology departments and national sight loss charities but more often or not we are sharing recipes, talking about making pastry and bread. Sometimes I feel a bit of an imposter, not because I have the most sight, but because I do the least cooking.
My non-disabled friends instinctively know never to use the word ‘brave’ around me. They might think it, but they know better than to voice such thoughts. Bravery doesn’t come into it. Being visually-impaired might be part of my identity but it doesn’t define me.
It is also really easy to forget you have an impairment. I often do. I’ve forgotten what it is like to see and I dream visually-impaired (now that would make a great research topic) so I find it hard to imagine what it must be like for sighted people. It must be dead boring knowing instantly what something is. I’m constantly putting the visual jigsaw pieces together and there are always pieces missing. My partner once thought two side-by-side post boxes were two fat women in red coats wearing black boots.
Occasionally, I will ask one of my ‘sighTED’ friends to perform a ‘TED’ task such as telling me what colour something that I’m considering buying is, but I like to think such a request is merely asking for their opinion.
Some of my non-disabled friends are drivers so of course they provide the transport but I’ve got the parking covered with my blue badge. A couple of friends have no sense of direction so I do the navigating. My partner can’t believe that certain friends rely on me to tell them what lane they need to be in. My sister once said it was lucky that I was the one in the family who lost their sight as I have such a good sense of direction.
It is great when you get to the stage in a relationship when your friends just accept you for who you are and provide any reasonable adjustments without any fuss. I was lucky enough to go on two artists retreats abroad last year. My friends knew I would get through the airport with the aid of assistance and they would meet me on the other side. I got the room on the ground floor of the site as no-one wanted me climbing the old winding staircase, but we had to find some basis on which to allocate rooms. (I’m hoping for the same room this year.)
They weren’t overly concerned about leaving me in a busy French market while they went for coffee, as they knew I would find my own way to the meeting point at the allotted time. Someone always explained what was on the menu. Although I couldn’t see to read the menu not everyone in our group read French. I gave the riverbank hike a miss as I didn’t want anyone to feel obliged to provide guidance. I was thanked later for this gesture as the going was a bit tough in places. Someone offered an arm in the Lascaux caves and I ended up being the only person on the trip who sold a piece of work, inspired by the cave paintings.
Over the years my friends have probably heard when and how I lost my sight and perhaps the name of my eye disease as I’m quite proud of it. ‘When are you going to get a new guide dog?’ has cropped up frequently over the last 4 years. I’ve been asked what I can see but some of these friends are artists interested in perspective and colour. My partner, also visually impaired, wants to know what sighted people see. Try describing your sight.