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Hannah Burgess | Visual Impairment, Life Changing Not Life Limiting

In this closeup of Hannah the right side of her long blonde hair is colored a bright orange. while the left is blonde. She has her signature winged eyeliner and eyeglasses. In this photo we can also see some partial tattoos on her left arm.

Hannah Burgess | Visual Impairment, Life Changing Not Life Limiting

Editor’s Note

For those of you who follow Bold Blind Beauty on a regular basis you may have noticed that this month’s schedule has been a bit off. There a number of reasons for this but I won’t bore you with the details. I am happy to present in this post our May Woman On The Move, Hannah Burgess.

In addition, I’m so excited to have some help with the website which is in the process of being revamped. Important considerations are accessibility and compatibility with WooCommerce. Our new Home Page will link to our major projects: 1) Virtual Work Experience Program, 2) InSIGHT Through Inclusion | Disability Is Diversity speaker series, and 3) Ambassador Program. There is more to come but for now it’s my pleasure to introduce you to Hannah Burgess.

As with all our video submissions below the YouTube video is the transcript for those who prefer to read. Enjoy! ~Steph

Beyond Sight Magazine Cover

In this closeup of Hannah the right side of her long blonde hair is colored a bright orange. while the left is blonde. She has her signature winged eyeliner and eyeglasses. In this photo we can also see some partial tattoos on her left arm. Text on the cover reads “Beyond Sight May 2022 | Women On The Move | Hannah Burgess.”

YouTube Video

“Having a visual impairment may be life changing, but it does not have to be life limiting”

~Hannah Burgess

Introducing Hannah Burgess

Hi, my name is Hannah. I’m 24, I’m from the UK, and I am severely sight impaired. Now this is going to be my story, I guess.

So I was born with my vision impairment, I have a condition called ocular albinism, which basically is a condition where your body does not produce as much melanin. Therefore, I have a lower level of vision, I’m very sensitive in the sun and to bright lights. I also have a lack of pigment in my skin, my hair and my eyes, the condition is genetic. So it’s passed on from me from both of my parents, neither of them have the condition, but they are both carriers of it. And as a result of that myself and one of my brothers have albinism.

I do have a number of other conditions as well, they are as a result of albinism, the one that affects me the most other than albinism is nystagmus. So nystagmus is an involuntary movement of the eye. So my eyes move uncontrollably. And I have a pendular nystagmus and they move from side to side. This basically means whatever I’m looking at constantly moves, it means I have trouble with balance, definitely and depth perception. So seeing how deeper step is, for example, that’s really tough for me. And yes, it does make me dizzy as well.

Living With Severe Sight Impairment From Birth

In general, I have, as I say, I’ve always had a low level of vision, and I was registered as severely sight impaired just after my fourth birthday. But I’ve worn glasses, since just after my second birthday, I have been a white cane user since the age of about six. So even when I was in primary school, I would use a white cane only had a symbol cane at the time, I’ve then gone on to use a long cane and now guide cane.

But yeah, I’ve had support with my vision from a very young age. The other conditions that I have, I won’t get into them all because there’s quite a few. And it’s a lot to explain, they all do little things. And they have smaller effects on me than the two that I’ve already mentioned.

My vision has always been quite steady. I had quite a big drop in my vision when I was around six or seven. And then I had another drop of my vision in my teens. But since then it’s been quite steady, and it has deteriorated but only very slightly.

When I get new glasses around every 18 months there’s always kind of a small change, which isn’t almost people who wear glasses have that sort of thing. So we’re hoping that my vision will stay steady now. And that if I do have any drops, it shouldn’t be too major.

Finding Independence With Guide Dogs Rory & Hetty

As I said, I’ve been a white cane user since I was really young. I’ve also been a guide dog user since a very young age as well. So I qualified with my first guide dog when I was 13. And at the time, I was the youngest person in the UK ever to have a guide dog and that’s when things really started to change for me. That’s when I finally was able to be really independent and go out on my own and really kind of do what I wanted to do and everything could kind of be more on my terms. It was absolutely incredible to have him.

Like I say I got him when I was 13. He worked for a good few years with me and he was retired a little earlier than most great dogs. There are just a few things for him that meant we needed to retire him early.

And I got another guide dog, my second dog, when I was I think around 15. So my first dog Rory, I had him when I was 13. And then I got Hetty when I was about 15 or 16. So I had Rory at the start of secondary school and then Hetty when I was doing my exams, like around year 11. And then when I left school, obviously, she was with me. Hetty worked for seven years being my guide dog and she was retired in 2021.

I’m currently on the waiting list for a new guide dog at the moment, so I’m hoping it’s not going to be too long before I have another one because it truly does make a drastic difference in my life. When I’m not using my guide dog, I go back to using my cane.

Hannah Living Her Best Life

Hannah is smiling directly at the camera. She has long blonde hair, winged eyeliner, and eyeglasses paired with a ruffled light blue top with white hearts and spaghetti straps. 

So there were so many things I could say about how it’s affected my life and things like that. But I’m actually gonna choose to speak about the amazing things in my life that have nothing to do with my vision.

So I am a mom to two amazing children. I had my daughter when I was young. I was 19 when I had my daughter, and so she is now four and will be five in September, and my son is two.

I am very lucky to have an amazing partner, he is wonderful. We have been engaged since about 2019. I say about 2019 it was 2019, he’s fully sighted. And the kids both have really good vision as well. There would have been a chance of them having albinism, but very, very slim. And we know obviously, now that neither of them do have it. They have wonderful vision which I absolutely use to my advantage when I can.

I work at a golf club, a local golf club where I work behind the bar, which is a job that I never thought I’d be able to really do. The company are fantastic. My manager is amazing and they’re really really supportive for making things accessible for me things that I can and can’t do. I try things and see if there’s a way around it. You know, they’re wonderful.

The reason why I wanted to talk about stuff like that, is, because all of that is normal. And I think that’s what people never kind of expect from someone who’s has a severe visual impairment. You know, vision is such a spectrum. And there are so many different levels of vision, so many different conditions. And everyone also deals with it really differently based on the conditions that they have.

When Severe Sight Impairment Is Normal

Now, I’ve found something really hard in the media, actually, is that a lot of the content creators and things like that, that I’ve been seeing all have suffered with sight loss. And I don’t particularly identify with that, because I never really had very good vision in the first place. So as I’ve grown up, this is this is all I’ve known, it’s the way I’ve always done things.

So when I’m trying to when people ask how do you do this? And how do you do that? And how is it different? Sometimes I don’t know what to say, because I don’t really think of it as doing it differently. Because it’s the way I’ve always done it, I haven’t had to readapt and change. I’m not saying it’s easy by any means. There’s definitely things that are very challenging and really hard.

When I became a mum, I found a lot more new things that I needed to try and learn and find a way around and figure out my own way of doing it. But in general, the way I do things is how I’ve always done them. And I think that’s harder to explain to people and get that across. And I find that quite hard actually, that a lot of visual impairments have drastic changes. And I’ve been so lucky that my vision, although I have a very low level of vision, it’s been quite steady. So nothing’s been really a shock to me.

When I was about 15, I know I would bit younger than that probably around for only 14, to be honest. I developed a condition called vitreous separation, where basically I just have a problem with my retina. And it causes visual disturbances sometimes.

So you know, when you look at a light for too long, and you get like a black spot? I get that but just randomly. I get things like that quite often. And that was really scary when that first started happening, because I had no idea what was going on. But it’s stable now. And I don’t have to really worry about it anymore when it comes and goes. And I know that it’s not really going to cause me any problem. But apart from that I’ve never had to really deal with drastic changes in my vision.

Embracing Gratitude

In this selfie Hannah the right side of her hair is dyed a light pink and she's wearing a gray crop top while smiling for the camera.

And I’m really grateful for that actually, which kind of sounds like a crazy thing to say that I’m grateful that I’ve never been able to see. But in a funny kind of way, I almost am grateful. Obviously, I can’t imagine what it would be like to have, like good quality vision. I can’t imagine what that’s like. But I don’t need that to have a good quality of life.

I always say that vision is or being visually impaired or blind is life changing. Absolutely. But it’s not life limiting unless you let it be. You can’t let it take over. I said that I was kind of grateful for not being able to see it, which of course I’m not. I don’t really mean it like that. But it’s made me who I am.

People say to me quite a lot, “If you could have an operation to fix your vision, would you do it?” And maybe it’s because I do still have useful vision, I would say no, because it truly does make me who I am. And I would be a completely different person if I hadn’t had to deal with all of these things and learn how to do different things and all kinds of stuff like this. And I don’t know where I would be, it’d be completely different. This is because I’ve always been visually impaired. I’ve never been anything else.

So as I was saying earlier about people with sight loss, they would have been a person before when they did have vision, and they’ve had to change and become kind of a new person. And I’ve never had that this is who I am. It’s always been who I am. And it’s who I always will be. And I’m proud of that.

Don’t get me wrong I’ve had as I said earlier, I’ve had challenges thrown my way. I’ve had crazy staff things that are hard to deal with not only because of visual issues. I’ve had all kinds of crazy stuff going on my life just as everyone has, I’ve had things to deal with. But you you get through it, and you do what you have to do to just work it out and figure out where it where it is that you need to be.

Sharing Her Story On Her Terms

So in general, I could honestly talk for such a long time about all this kind of stuff. And it’s refreshing to be able to just kind of blurt out and say exactly what I’m thinking, you know, like, obviously, I’ve spent a whole life with people asking different kinds of questions. And the thing that gets to me the most is people telling me I don’t look blind, or that I’m too young to be blind and all of that kind of stuff really does get to me that’s hard. Because well, first of all, why should it look like anything you know?

But to be out here saying, my piece and expanding myself and just kind of freely chatting about my vision and being able to be really open about it is been wonderful. I always try to be really positive as much as I can be. I think it’s really important to do that. So hopefully that comes across today.

I’ve really loved talking to all of you. I’m really grateful to be able to share my story and to talk about my life in such a positive way and only hope that it impacts someone else positively as well. I think I’ll send that off now because I’m gonna get off on a tangent but I’m so grateful thank you very much for listening.

Hannah’s Bio:

Real life ups and downs of a visually impaired Mum of two beautiful children.

Blind Mum vs The World is a way for me to show everyone that while my lack of vision may affect a lot of life situations, it does not affect my ability as a parent. I’m often asked how I cope being a Blind mum and I always say “I cope the same as every Mum, my disability doesn’t define me as a parent”

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Connecting With Hannah:

Image Descriptions:

  • The header photo is identical to the image used on the Beyond Sight Magazine cover and YouTube thumbnail. In this closeup of Hannah the right side of her long blonde hair is colored a bright orange, while the left is blonde. She has her signature winged eyeliner and eyeglasses. In this photo we can also see some partial tattoos on her left arm. Text on the cover reads “Beyond Sight May 2022 | Women On The Move | Hannah Burgess.”
  • Hannah is smiling directly at the camera. She has long blonde hair, winged eyeliner, and eyeglasses paired with a ruffled light blue top with white hearts and spaghetti straps. 
  • In this selfie Hannah the right side of her hair is dyed a light pink and she’s wearing a gray crop top while smiling for the camera.
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