Superheroes with designer eyes

In 2015, Holly’s love for writing and her desire to share her experiences of living with a visual impairment led to the creation of her blog, Life of a Blind Girl. Little did she know that within the next few years, she would be listed as one of the top 100 most influential disabled people in the UK in the 2018 Shaw trust Disability Power 100 list, featured as one of the top 100 disabled bloggers by Stairlifts Reviews, and named one of Ability Superstore’s top 10 disability bloggers, just to name a few of her accomplishments.

Life of a Blind Girl is Holly’s platform to provide advice, education and support on all there is to know about visual impairment and disability. From tackling common misconceptions about disability to posting about assistive technology and her lifestyle, Holly’s hope is to inspire, educate and motivate her readers.

Check out Holly’s blog Life of a Blind Girl here.

  1. Can you tell us a little about your background and story with ROP?

My name is Holly, I’m a 23-year-old disability and lifestyle blogger from the UK. I was born at 24 weeks and weighed 1lbs 6oz (624 grams) so I was very small. Due to being born so early, I developed Retinopathy of Prematurity (ROP). I have a detached retina in my left eye and can see light and dark out of my right eye, meaning that I have no useful vision. There are 5 stages of ROP and I have stage 5 as I have total retinal detachment and have no useful vision. I had an operation when I was a baby which did not work and my vision could not be saved.

I’m a braille reader and I use a range of assistive technology on a daily basis, I’m also a long cane user.

When I was a child, I did everything that my sighted friends did, from learning to ride a bike, going to the park, attending brownies, playing and so much more.

I attended mainstream education where I studied all the same subjects as my sighted peers, I then went onto University where I graduated with a degree in Children, Young People and Families. I now work as an Assistive Technology Advisor at the University that I graduated from.

I don’t let my vision impairment stop me from doing the things that I love – I love going to concerts, I go tandem cycling and used to go swimming every week when I was a child, I can also play the flute. I also have a keen interest in beauty and fashion.

  1. What led you to create your blog? What was your hope in starting your blog and where do you hope it takes you?

I started Life of a Blind Girl back in 2015 to share my experiences of living with a vision impairment, to educate people on sight loss and disability, as well as tackling the common misconceptions surrounding these topics. I started my blog because I really enjoy writing, it was my hobby, however it’s become so much more than that, it’s a huge part of my life.

Some of the aims of my blog are to educate people on vision impairment and disability, tackle the stigmas surrounding these topics and show people that just because a person has a vision impairment or another disability, it does not mean that they can’t live a normal, independent and fulfilling life. I have a passion for helping others so I really hope that my blog provides people with some support.

Life of a Blind Girl has gone further than I ever imagined, I’ve written guest posts for many organizations, been involved in campaigns for the RNIB and Scope, done radio interviews on RNIB Connect Radio, BBC Radio York and BBC Radio Leeds, been featured in a newspaper and been shortlisted for a couple of awards. One of the most surreal moments was being named as one of the top 100 most influential disabled people in the UK in the 2018 Shaw Trust Disability Power 100 list, it’s definitely one of my proudest achievements! I’m not saying any of this to brag or to show off, I’m simply saying it because I love blogging and I never knew or thought about how far it would actually take me. It never occurred to me that people would read my blog from all around the world!

Looking to the future, I will continue blogging for a long time, I hope to continue to share my experiences of living with a disability, educate people and continue to tackle the myths surrounding sight loss and disability, as well as help others in any way I can. 

I’d love to write for publications, do more radio interviews and get involved in more campaigns. I’m very excited to see what the future has in store!

  1. What are some of the challenges you have faced with ROP throughout your life and how have you been able to overcome them?

Having a disability, in my case a visual impairment, can come with many challenges. I’ve faced many challenges and I know that I’ll continue to do so, but I also know that I’ll learn from them. One of the challenges that I most frequently face is the lack of assistance when travelling on trains. Despite always booking assistance in advance, on the majority of occasions, it never turns up and I often have to get off the train myself which I’m very confident in doing but then I have to ask for help to get out of the station,  It becomes even more problematic when I need to get a connecting train. I always let train companies know whenever I have faced this problem so that they can try to resolve it in the future, not only for myself, but for other disabled people as well. I have also written to my MP regarding this issue as well.

One extremely common issue that blind and visually impaired people face on a regular basis is inaccessibility. This could be the inaccessibility of a website, a venue, cafe or restaurant, the list goes on. One of the challenges that I face on a regular basis is the inaccessibility of websites. I want to be able to shop online like my sighted friends but I am often unable to do this because the website isn’t accessible with a screen-reader or there are no descriptions of items.

One other challenge that I face is people’s incorrect perceptions. There are many people that have thought that I couldn’t do things because I’m blind, or that I wouldn’t get through mainstream education, get a degree, get a job or do basic tasks. I try to educate these people on such misconceptions and prove them wrong because that feels good, doesn’t it?

One of the main challenges that I faced when at school was teachers not giving my teaching assistants work in time for them to put into an accessible format for me. We always managed to figure out a way around it so that I didn’t miss out, my teaching assistants always made sure that I didn’t miss out. My parents and I had regular meetings with various staff at school to try to resolve the issue, and as I got older I spoke up, expressed my feelings, and fought for my rights.

In terms of more personal challenges, I struggled with using the long cane for a long time. I felt different from everyone else my age, and it filled me with dread and anxiety whenever I had to use it. I felt like it made me stand out from others and I saw this as something negative. However, I gradually started to realize that the cane was my key to independence, it was my freedom. Once I realized that, it changed everything!  I now use my cane without a second thought, I couldn’t imagine my life without it now!

Having a vision impairment comes with many challenges, many of them aren’t easy, but it’s how you deal with them and what you learn from them that is important.

  1. Were challenges you faced with ROP as a child different than challenges you face as an adult? Was it a difficult transition from being a child to living an independent life as an adult?

It’s a given that you’ll face challenges both as a child and an adult, some may be similar, but some may be completely different. When I was a child, some of the challenges that I faced were people not understanding my vision impairment, people not wanting to be friends with me because of it, lack of access to the same things as my sighted friends, and me learning to use a long cane. Some of these aren’t as noticeable any longer now that I’m starting my adult life as I’ve found a good set of friends who look beyond my disability, and fight for my rights now. However, I constantly face inaccessibility and people’s wrongly perceived ideas so I don’t think that changes regardless of what age you are.

When I was a child, I don’t think I fully embraced and accepted my vision impairment. I certainly didn’t see it (pardon the pun) for what it was. I didn’t realize what a positive aspect it could have on my life.  I struggled with my journey of acceptance in some ways but as I got older I really embraced it and fully accepted it. In terms of acceptance, that has definitely changed dramatically as I’ve grown older.

  1. Some of our “glow” families with KnowTheGlow have children who have lost vision in one or both eyes.  What advice do you want to give to children who are blind or have a visual impairment? Is there anything you wish someone told you when you were growing up?

There are so many things that I wish I’d have known when I was a child!

I always say that we live in a predominantly sighted world because I think we do, the world wasn’t exactly made accessible was it? You learn so much from the inaccessibility, it can be frustrating and upsetting but it’s all teaching you life lessons, and making you a stronger and wiser person. 

Having a vision impairment means that you see the world from a unique perspective and that is most definitely a good thing, and nothing to be ashamed of!

Focus on the positives: we are often exposed to the negative representations of disability, the focus is often on limitations and in-capabilities, but in reality, this isn’t the case at all. Focus on the positive aspects of your vision impairment, like what it enables you to do and the skills you’ve developed because of it.

You are not a burden: you may feel bad for asking for people to guide you, for your work to be put into an accessible format or for asking someone to go somewhere with you. Your vision impairment isn’t a convenience but you will find that people are more than happy to help when you need it if you let them.

Fight for your rights: There’s no denying that this can be scary, and often exhausting but it’s so important to fight for your rights and what you deserve. Speak up for yourself, you are the only one who knows exactly how you feel and it’s you who is living with a vision impairment. It’s something that you will get used to doing, that’s for sure!

Independence is key: Learning to use a cane or learning independent living skills sets you up for the future. Independence stems a lot further from this.  You need to be independent in all aspects of life – try to be as independent as possible. There will be times when you need help and that’s absolutely fine, it’s about finding the balance between being independent and asking for help when you need it. Remember that your cane is your key to independence.

Your disability isn’t the only thing that defines you: You are so much more than your disability, you have hobbies and interests and a thousand things that you’ll be passionate about.

There is an amazing person behind your disability so don’t be afraid to express who you really are.

Those who mind don’t matter, those who matter don’t mind: we all meet people that don’t understand our disability and this can be upsetting, but you need to surround yourself with positive people who love you for the person you are.

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