Mar 6
Making the invisible, visible — Blindness
So I guess that most people have a fixed image of a blind person. Someone with no vision, a white cane or a guide dog, and severely impaired (maybe)?
Yet I wonder how many people know that only around 4% of people who are registered as blind/severely sight impaired have no useful vision. This will become important as I progress with this piece.
I was born with a degenerative retinal disease called retinitis pigmentosa, a rare disease that affects approximately 1 in 4000 people.
- a touch of science if anyone wants to skip this section — retinitis pigmentosa is not actually one solitary condition impacting 1 in 4000 people, but is an umbrella term for potentially hundreds of different conditions with similar presentations. There are three core methods for genetic conditions such as retinitis pigmentosa to come about. I have the most typical — autosomal dominant. This means only one parent has to have a copy of the defective piece of genetic material for it to be passed on. The other types are autosomal recessive, meaning if one parent has the gene there’s a 25% chance that their child will be a carrier, if two parents have the gene, there’s a 50% chance the child will inherit the condition; and, x-linked which typically means that girls have a 25% chance of being a carrier, and boys have a 25% chance of developing the condition. I do, however, know females that have developed retinitis pigmentosa with x-linked inheritance and it has been very aggressive!
I do consider myself fairly lucky. I am from a very large family with RP and have been brought up alongside people with little to no eyesight. It was pretty normal for me. That does not necessarily make it easy.
I was able to drive up until the age of 26. I lost my license and sold my car. Never to drive again. Over the next three years I lost a significant amount of vision — going from legally driving to legal blindness.
With RP the eyesight diminishes from the outside, moving inwards. Creating “tunnel vision”. I have now lost all of my peripheral field of vision, and the majority of the central vision has been retained. I know that it won’t be forever and when you only have around 8 degrees of vision remaining, every fraction of a degree is a significant loss.
Throughout my life I have tried to just get on with things as normally as possible. I think I have done that pretty well too. Obstacles have been thrown in my way and I have come up against discrimination in the workplace. Rightly or wrongly I have never taken direct action on that as it is typically a sign that the employer is not good enough to work for and moving onwards and upwards is the best way to deal with these matters.
The core focus of this article is the shift from my condition going from being invisible, to visible. When it was invisible I recall asking for a reasonable adjustment in the workplace (a closer parking space as I was night blind and my parking space was up a long dark road). From that moment on the company made numerous false allegations, resulting ultimately in my being constructively dismissed. Some of the allegations were hilarious and very easily disproven, and were. Others were a case of one person’s word against mine. I do hope that those involved are ashamed of their actions. It was a useful catalyst for me to move on and I never looked back.
After losing my driving license I went to university. I hated my career in finance and wanted something different. Something rewarding. When at university I took the opportunity to access long cane training so I could safely use a long cane (white stick, whatever you want to call it). Sighted people probably don’t realise that you’re supposed to be trained before using a long cane. Even having been trained i still get jabbed in the stomach when I use it. I rarely used my cane. My friends were supportive, yet for the whole of my life RP had been something pretty much hidden in the background. When I revealed its existence I came across prejudice and discrimination. I avoided using my cane.
Avoidance of the long cane has its own consequences. I have walked into telephone poles, lampposts, fallen down pavements, tripped over signs. I was in Rio de Janeiro once and on the same day walked into a concrete bollard as well as a telephone box. Yet I still avoided the cane for daily use. I was walking to the tube in Uxbridge one afternoon, someone appeared from a shop without my seeing them (although I don’t take full responsibility for this one!) and i walked into the side of their head. They weren’t pleased, i had a bleeding nose. Thankfully someone from the shop brought me tissue and i sat on the metropolitan line with a tissue mopping up the stream of blood.
Even when using a cane in those early days, life wasnt purely roses. I recall two specific incidents, one in Tottenham Court Road with a group of colleagues, i was using my long cane and someone (i believe they were in a world of their own using their mobile phone) went careering over my cane, landing flat on their face — in one of the busiest parts of London. My colleagues helped her up. Similarly, in Uxbridge, someone not looking where they were going, tripped over the cane and faceplanted the floor. These two incidents put me off using the cane.
The other challenge? Being classed as a fraud. As people assume that anyone with a long cane or a guide dog cannot see at all, when we look at something we get accused of faking it for the benefits. I was on the district line in the summer, wearing my sunglasses and with my guide dog, and i heard someone discussing me with his friends. There was the claim that I had looked at him and was faking being blind. I do honestly wish I were faking it! Life would be a lot more simple. Yet guide dogs do not give out their highly valuable and highly trained dogs without verifying that someone actually needs one. Ignorance is not bliss.
There was a meme being shared on social media a while ago with a blind lady using a mobile phone. She was ultimately being publicly shamed as being a faker due to her having a long cane and using a phone. This really is ignorance at its worst, and shows how ignorance can be harmful. The BBC had an article highlighting how you can be blind and use a phone: https://www.bbc.co.uk/news/blogs-trending-47031509
One thing I always knew was that I wanted a guide dog. I disliked the cane and a dog would help me massively. The assessment with guide dogs UK highlighted how tense my shoulders were when I walked without any aids — I was constantly braced for impact! I was slightly concerned prior to getting a dog — what would people think? Last week I was walking through town unaided (albeit a danger to the public and myself!) and here I am now, with a guide dog. Of course they’ll all think I am faking it. Those thoughts faded quickly as I bonded with my guide dog. He is the best thing that has happened to me for an age. He guides me around obstacles, helps me get to work, and makes my condition visible. I recall reading a report many years ago on how people would actively cross the street to avoid a blind person with a long cane, whereas when they have a dog there’s less prejudice and less fear of the blind person. I have definitely noticed that.
The unexpected benefit? I am now more comfortable with being “out” as a blind person. I am more comfortable with my condition being visible. I use my long cane when I free run my guide dog and have no qualms with doing so. I still come up against ignorance, discrimination, and bigotry. It amazes me often how people attempt to flout the law (equalities act (2010)), and that might be the subject of some of my future writing.
I am truly grateful that my guide dog has aided me in so many ways. Mostly with accepting who I am as a disabled person. Someone who once had an invisible condition, and now has one that is more visible. Even if I do still get asked “are you training him?”. Errm, no. He is my dog. I am blind. “oh, but you don’t look blind!”.
What does blind look like? I think society needs to revise the conceptualisation of a blind person so it’s anyone with a visual impairment. A normal human, just one that might need some additional assistance, or to use some form of mobility aid, in some settings.
