Imagine being told at age twelve that you were being registered blind/severely sight impaired, that you were likely to lose most of your vision due to your degenerative eye condition and that your life might not be as normal as others. That more barriers and struggles were being added to the already challenging teenage years that were just around the corner.
This was my reality.
Retinitis Pigmentosa has dominated many aspects of my life and it’s lead to me having to adapt many things in order to make them accessible to me in a world which wasn’t designed for us who can’t see.
Living with sight loss can be challenging and there have been many occasions when I’ve had to fight for the services and support I’m entitled to alongside fighting an internal battle on my journey to acceptance.
If you’re a regular reader, you’ll know I’m not one for sugar coating anything on my blog and today, I wanted to give an honest representation of what it’s really like to live as a visually impaired girl in the really early stages of her 20’s.
As always, I’m speaking from my own experiences here and I’m not speaking on behalf of any other blind/VI person out there but I’m hoping some of you might be able to relate.
As I’m sure is common for most people, friendships and making new friends has been a bumpy road for me.
Now, I can’t blame that on my vision impairment because a lot of it wasn’t down to that but it did contribute to a few friendship failures, whether it be because people saw me as being different or even sometimes, people feeling frustrated by my disability.
In the past, people have assumed that my friendship group must consist of visually impaired people alone and that a fully sighted person couldn’t or wouldn’t want to be friends with someone living with sight loss.
I have a couple of visually impaired friends and it’s really nice to be able to connect with them on things that a fully sighted person wouldn’t necessarily understand. But, as I’ve mentioned before, the majority of my friends are fully sighted and I’m now really lucky to have such a good supporting network around me who often don’t give my disability a second thought but will always be prepared to help me in any way they can.
I thought I’d give this a mention because it’s something people have asked me about in the past.
I’ve received questions such as ‘Do you go out even though you’re visually impaired?’ and ‘I’m guessing you don’t go out because of your disability, do you?’
Let’s clear this up.
I’ve never been a party girl, it’s just not a part of my personality, I don’t drink either and I’ve had stick for that in the past but personally, I don’t think there’s anything wrong with it, it’s just not my cup of tea, or glass of wine if you want to make it literal.
Besides, I think it’s still possible to have a good time despite not being a massive party goer or by drinking alcohol. I have so much fun when I’m out with my friends and I don’t have the hangover to pair with it on the next day, a win win situation, right?
Anyway, I’m going off on a tangent here.
I feel like there’s this expectation that someone who’s around my age must be going out constantly, drinking until the early hours and letting their hair down but, apart from a good catch up with friends at Weatherspoon’s, I’d choose a cosy night in over a night out any day.
Call me boring but a loud pub or club isn’t my scene and that’s because being in an environment where I can’t see nor hear makes me feel extremely anxious.
I’d love to go out more than I do but I feel like my vision impairment is a contributing factor as to why I don’t because I don’t want to be in a situation where I feel quite lost.
Some of the goals I’ve had to set myself with regard to my vision impairment and working to achieve those goals has been one of the hardest things I’ve ever had to do. This is especially true when it comes to independence.
Things such as pushing myself to pick up my cane and learning to feel comfortable when using it was something that definitely didn’t come easy to me. I think that was because it made me stand out. It’s not something that you see people my age using because they don’t need to and I often felt judged for it. I talked more about my experience with the cane in this post if you fancy giving that a read.
As a VI girl, I don’t have the luxury of being able to drive, I don’t have the freedom of being able to hop on a train without assistance and without planning my journey ahead of time.
it’s the feeling of lack of freedom that makes me feel trapped sometimes.
A lot of my friends talk about their aspirations to travel, to see the world and be independent in that way and I also see a lot of people talking about it on social media and it’s something I wish I could do.
I’ve heard great stories of visually impaired people going travelling and I really admire people who do that but personally, I don’t think I’d ever have the confidence to go without a friend or family member. I was completely lost walking around Debenhams in Chester the other day so I dread to think how I’d be in another country!
Don’t get me wrong, I do have independence around my local area, I go for walks on my own and I’m happy going on the train to places I know have good assistance but having that freedom of being able to go somewhere I’ve never been without having to memorise the route is something I can only ever dream of.
The working world
I was lucky in the sense that after I left sixth form, I landed a job as a Trainee Community development assistant for the RNIB, a job which I loved and gained so many skills and new experiences from.
Unfortunately, it was only a year’s contract which came to an end in August 2017 and since then, even though I’ve had a couple of work experience placements/voluntary positions, I haven’t found paid employment.
I perform a job search at least once a week, maybe even two or three times. As a blind/VI person, it’s hard to find a role that can be made accessible to me, I’ve found myself scrolling endlessly through job searching websites just for it to lead to a big sigh at the end and hearing myself speaking the words ‘nothing, again.’
The problem is that I can’t go find a job in a pub, cafe or a restaurant to earn a little extra like others my age might do. I wouldn’t be able to see the till and customers would end up with their food on their lap rather than on their plate, I can just see those awful TripAdvisor reviews.
My point is, finding a job in this day and age is hard going as it is but finding one as a visually impaired person is even harder and as a young person who is very driven when it comes to working, this can be disheartening at times.
Of course, there are many other aspects of my life which are different to your average 20 year old, things such as having to use assistive technology on my phone/computer in order to use them effectively, being sighted guided if I’m out and about and don’t have my cane to hand and having to have things such as letters and documents read out to me if they’re not in an accessible format.
However, this does not mean that I should be treated differently or that I should be thought of in a different way to any other person my age.
Now, at the ripe old age of 20, I’ve gained a lot more perspective. Sight loss has brought a fresh set of challenges to my door on more than one occasion and I’ve been able to learn a lot through those challenges.
Many aspects of my life might be a little different to your average 20 year old, I might not have the freedom that a fully sighted person has, I might need to do things such as cooking a little differently, I might need to altar the way I do my makeup or pick out my outfits but I’m still able to do a lot of the things that are considered to be ‘normal’.
Although I need to switch things up a little sometimes in order to make things accessible to me, I’m still able to do a lot of the things that fully sighted people do and that’s really important to me.
At the end of the day, I can’t change what I’ve been given and the condition I live with but what I can change is how I approach it and how I deal with the circumstances I’m in.
Losing my sight has forced me to think about how I can adjust my life to make it accessible to me and how I can go about achieving the things I want to achieve.
Sight loss has always been a challenge for me and I think it always will be in one way or another but, in the last couple of years, I’ve chosen to embrace that challenge and make the most of what I have.
At this age, or any age for that matter, there’s a lot we have to contend with, a lot of things to figure out and sight loss has been an extra thing for me to navigate as it is for many people.
While there are times when I want to curl up into a ball and cry, I’d say 95% of the time I look at my disability in a positive way and I’m grateful for the opportunities it has given me.
Although I’m still losing my sight, I still have plenty of vision and plenty of passion to move forward, focus on my future and achieve my goals.
Is there any aspect of your life which perhaps means that you don’t fit into the notions of your age group? How do you go about embracing that and looking at it in a positive way? I’d love to hear from you.