22 July 2019
Sight loss affects around 2 million people in the UK, and around 360,000 of them are formally registered blind or partially sighted. There are varying degrees of vision loss or visual impairment. Some people may have vision loss from birth, which could be caused by a genetic condition, an infection acquired by the mother during pregnancy, or premature birth. Other people may develop sight loss later in their life due to a health condition or an accident. As we age, it’s normal for our eyesight to decline a little, but there are several age-related conditions that cause more severe sight loss, such as glaucoma.
To help raise awareness of sight loss and visual impairment, and to find out what it’s really like to be a blind in a sighted world, we spoke to Holly, a 23-year-old woman from Yorkshire who has been blind from birth. Holly writes Life of a Blind Girl, a blog that gives a fascinating insight into what it is like to be a young, fun-loving music fan, navigating the world with a disability and never having had any sight.
Holly explained to us that she has a condition called retinopathy of prematurity – which she developed as a result of being born prematurely, at just 24 weeks. After an initial few weeks that saw Holly fighting for her life in an incubator, her parents were relieved that she pulled through, but were left stunned when doctors discovered she had a problem with her eyes.
“I weighed 1lbs 6oz (624G) when I was born. I have a detached retina in my left eye and only have light perception in my right eye.”
Babies born prematurely are at risk of developing this condition because human eyes develop quite slowly through pregnancy, and are only completely formed and functional around week 36. The retina, which sits at the back of the eye, is essential to vision as it converts images into nerve signals which the brain then interprets. In retinopathy of prematurity, the blood vessels at the back of the retina may be damaged or not yet formed properly, which can pull the retina out of position, seriously affecting vision.
Blind all her life, Holly has never known what it is like to see, which is a strange concept for most of us who have sight, but to her it is normal life and her upbringing was like that of many sighted children.
“I had a fantastic childhood, I did all the same things as my sighted friends – swimming, riding a bike, going shopping etc. My family have always encouraged me to be independent and have never treated me any differently because of my vision impairment.
“I attended Brownies, and other clubs. I also learnt to play the flute as well as learning music braille. My childhood was definitely jam-packed and my vision impairment didn’t stop me from socialising. I attended mainstream education all the way through. At school, I had amazing teaching assistants who put work into braille or electronic formats for me so that I could do the work like my sighted peers.”
Holly is a sociable person, and has a strong network that she can count on, but has found that, over the years, being blind can make forming friendships challenging.
“I have an amazing family and an incredible group of friends, however, I have found it difficult to make friends and build relationships in the past, especially at school. When I was at secondary school, people often thought that it “wasn’t cool to be friends with the blind girl”. Although I felt isolated at times, I didn’t let this bother me as I found friends who looked beyond my disability and saw me for the person I am. As I’ve grown older, I’ve developed friendships with both sighted and disabled people.
“There’s no denying that it can be daunting to meet new people, especially when you have a visual impairment. As I have no useful vision, it can be rather tricky for me to just meet new people; if I walk into a room filled with unfamiliar faces, I will have no idea who is there and people don’t always realise that I’m blind.”
Holly has never let being blind stop her doing what she wants to do, and she has many achievements to be proud of, such as obtaining her degree and embarking on a career in an area she has a vested interest in.
“I am an Assistive Technology Advisor at a university, where I teach students how to use a range of assistive technology. I teach both disabled and non-disabled students. As well as this, I promote assistive technology to staff and students, deliver workshops and often attend meetings.”
Assistive technology refers to devices and equipment used by older people or people with disabilities, to enhance their life, mobility, and abilities and may include daily living aids and telecare products. Holly uses assistive technology to help her day-to-day.
“My employer has been very supportive and my colleagues understand my vision impairment – they are always happy to help. I have been provided with a Jaws® (Job Access With Speech) computer screen-reader program and a braille display through Access to Work; this scheme also pays for a taxi for me to get to and from work which is brilliant.
“When I started work, I had some orientation and mobility training. My employer was more than happy for me to do this so that I could navigate the campus using my long cane independently. They have also adapted some of the systems that we use to ensure that they are fully accessible.
“Daily, I use a long cane, mobile phone, various apps that help me with aspects of daily living (such as colour detection and navigation) and an OrCam which reads printed materials out loud. I will also sometimes use a liquid level indicator when pouring hot drinks.”
Holly talked us through a typical day in her life which, like many people, involves work and hobbies.
“Once I am up and ready, I’ll usually do a bit of blog admin before starting work. I’ll get my taxi to work and make my way to the office. People that see me in the street will sometimes ask me if I’m ok, grab my arm and try to take me the way they think I should be going! Or people will sometimes assume that I’m lost when this isn’t the case. These encounters can be very off-putting and rather frustrating.
“Whilst at work, I will sometimes come across a website or online platform that isn’t accessible, meaning that I often have to report it back to the developers.
“Once I’ve finished my usual working day, I’ll head out of the office and get a taxi home. Once I’m home I’ll have my evening meal, do some blogging and take some time for myself. Self-care is really important to me, so I’ll often listen to music, read a book, watch some TV or check in with my favourite YouTubers.”
Holly reflected upon some of the challenges she often faces in daily life.
“I have to deal with people’s wrongly perceived ideas and assumptions, people assuming that I need help when I don’t, obstacles in my way when I’m out and about walking independently. If pre-booked assistance doesn’t turn up when I’m travelling alone on a train, this can often leave me in some rather tricky situations. In fact, accessibility is one of the most common issues that I face. Websites are often not accessible, meaning that I can’t do the simplest of things independently such as online shopping.
“I think one of the most challenging things about being blind is not being able to go where I want, whenever I want. I often have to plan things in advance which can be frustrating at times. I would love to be able to drive which would alleviate some of these problems.”
Holly is keen to fight the stigma of being blind, and lives a full, active and fun life, with a positive outlook on her disability.
“Having a vision impairment can often be seen as something negative, but for me, it’s the complete opposite. My vision impairment has given me some unique skills such as learning braille, learning to use a long cane and also how to use a range of assistive technology. Being blind means that I see the world from a different perspective and I often think this can be a good thing at times.
“I think it’s important to focus on the positives though, rather than dwell on the negatives. If I didn’t have a vision impairment, I certainly wouldn’t have started my blog and blogging is such a huge part of my life. If I did have sight then I may have started a blog discussing other topics, but Life of a Blind Girl wouldn’t be what it is today.”
We asked Holly how people react to her explaining that she is blind.
“Everyone has a different response to me telling them I’m blind. Some people are completely fine, and try their best to understand it, whilst others panic and don’t really know what to do. People often try to grab me and guide me the way they think I need to go, others talk to the person I’m with, rather than me, and some talk to me like I’m a child.
“People sometimes worry that they’ll offend me by asking questions or asking about my blindness, but I always tell them that I’d rather them ask, than assume and going on wrongly preconceived ideas. I’m very open about my visual impairment and I do think this helps.
“People sometimes assume that I can see more than I can, or tell me that I don’t “look blind” whatever that may mean!”
In her spare time, Holly does all the usual things that many 20-somethings do.
“I enjoy going out with my friends and family – whether this is going out for meals, going to the cinema, having a night out or just having a chilled night in. I also love going to concerts (I probably go to too many) but this is definitely one of my favourite things to do. There’s no other feeling like seeing your favourite bands or artists live! I also enjoy shopping and purchasing new beauty and fashion bits.”
Holly is currently single, and describes the world of dating as more difficult for people with a visual impairment.
“There are many stigmas surrounding dating and visual impairment, such as that blind and visually impaired people (or disabled people in general) don’t have relationships or that they need caregivers and this is certainly not the case. We may need some assistance, but it doesn’t mean to say that we can’t have a relationship like a sighted person or with a sighted person.
“With online dating being ever so popular, it can be difficult for a person with a visual impairment like myself… if that’s the route you want to go down. The accessibility of dating apps is sometimes an issue and apps are often very visual – you tend to have to select people you are physically attracted to on a photo.
“Generally, I think it’s important to find someone that looks beyond your disability, loves you for who you are but also understands it at the same time.”
Holly is really positive about her future.
“I’m really excited about the future and can’t wait to see what it has in store. I hope to continue my job as an Assistive Technology Advisor or work with disabled people in another role, and also continue my blog in the hope of helping others.”
We would like to thank Holly for taking the time to answer our questions and give us a fascinating insight into her life.
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