Welcome back, everyone!
Thank you for coming back for season three of The I Can't Stand Podcast. I appreciate every single one of you.
Today I have a fantastic episode with Ben Harrington.
Ben Harrington is a lovely young guy, fresh out of university living with vision impairment. Ben has a rare, yet genetic eye condition called Retinitis Pigmentosa.
Episode Transcript:
Peta [00:00:02] Hello and welcome back to the I Can't Stand podcast. The podcast answering your questions on what life is like when you have a disability. My name is Peta. I have cerebral palsy and I'm your host. I'm so excited to be back in your ears for 2023. I hope you had a lovely Christmas if you celebrate Christmas. A lovely summer break if you're on this side of the world or a lovely winter break, if you're on the other side of the world. This week, I have the amazing Ben Harrington. Ben is a lovely young guy. He's in his early twenties and he has a vision impairment. I'm always excited to speak to a younger person with a disability. I feel like I learn a lot from their perspective. And this episode was no different. What's it like to live with a vision impairment? Let's find out. Without any further ado, let's hand over to Ben.
Ben [00:01:16] Thanks for having me Peta. My name's Ben Harrington. I'm from Melbourne. I'm 22 years old. I've just graduated with a Bachelor of Communication. I work in an organisation called Travellers Aid Australia, and I have a visual impairment called retinitis pigmentosa.
Peta [00:01:35] Thank you so much for being here, Ben. My first question to you is, do you consider yourself to be disabled?
Ben [00:01:43] Yeah. It's a really interesting question and a big question. I was talking about this with someone who I was put in contact with through work who also has retinitis pigmentosa or or RP as it's shortened to. He said that he didn't like to be identified as having a disability. And so I sort of took that on board. In my own experience, I've identified myself as being disabled or living with a disability, sometimes even out of necessity I think. Like identifying as having a visual impairment isn't always necessarily taken seriously enough. But yeah, no I identify myself like that with with pride. There's absolutely no shame in that identification. But I can see where the person I was talking to about it is coming from in acknowledging that, you know, it's it's an impairment rather than a disability in some ways.
Peta [00:02:40] You said before that you sometimes feel like you have to prove that you have a disability. Do you feel like there's a difference in perception of vision impairment or a somewhat disconnect of what vision impairment is?
Ben [00:02:58] I think there definitely is. I think there's a lot of catching up to do and progress to be made in sort of the awareness and consideration of other people have for people with vision impairments. I think there's a general maybe popular understanding of, you know, seeing someone with glasses and assuming they're for reading glasses, which is for the purpose of most people have them for, I suppose. But because, you know, vision impairments and some other sensory disabilities are generally hidden, disabilities are not as visible or, you know, outwardly identifying as is others. And so I think that presents a bit of a barrier in terms of, you know, people helping out or sort of understanding where you're coming from, given that they might not sort of be aware that, you know, their first instincts might not be to assume that you have a disability.
Peta [00:03:50] So if you could wave a magic wand and help people better understand one thing about vision impairment, what would it be?
Ben [00:04:01] That's really interesting. Yeah, I suppose it is just sort of related to that. It's about. Yeah, my. My magic wand would change people's first instincts to consider that someone might have a disability and might have a vision impairment first and foremost based on the interaction that they're having with them. You know, I find myself being a bit caught up in how I'm perceived in my, you know, behaviours or actions. You know, I, I can see that some things that I do would, would outwardly look to others like I'm clumsy or incapable of doing something. But if my, my magic wish or my, my, my magic wand would be used to change people's first instincts to at least consider that that could be an option for someone, I think.
Peta [00:04:57] I relate very much to the fact of clumsiness. I'm super clumsy with my cerebral palsy. I'm certainly not elegant, but in some ways I think my disability has allowed me to develop skills that I might not have if I didn't have cerebral palsy. Do you think you've developed skills because of your vision impairment?
Ben [00:05:22] I've had to become more adaptable as a as a part of that, I think. And I think that's a universal trait and skill that people with disabilities are sort of forced to take up and and learn and become. Because it's not really much other way around going through your life with a disability without sort of developing that.
Ben [00:05:47] It might be a good opportunity for me to briefly explain or give at least my perspective on on what is RP and how I how I engage with and how I live with it. So it's a degenerative eye disease that affects the photoreceptor cells in the retina. And that loss of those cells means that people without they have generally reduced central vision, really constricted visual field, that peripheral vision and also not blindness. Those cells in the retina are what sort of are responsible for dictating those sort of visual abilities.
Ben [00:06:25] My peripheral vision is at about ten degrees compared to the average 140. So I've got very restricted peripheral eyesight and I can't see in the dark. I can't see at night. But it progresses differently for each person. My vision gradually declined when I was younger, but to a point now where it's fairly stable compared to others who might lose it very quickly or continue to lose it over time.
Ben [00:06:52] In a practical sense, you know, going out with friends, playing sport, going to a party, walking through the city, getting somewhere at night, these are all things that someone wouldn't think twice about and comes naturally to them. But it can be really challenging for for me if I'm, you know, going out with friends, I need to find out how accessible where we're going is. If I'm walking through the city, I need to be completely alert And aware because there is people coming in from left and right and outside of my peripheral vision. You know, if I'm walking not only to have my torch or cane and, you know, and be familiar with what's around me enough to not hurt myself. There's a mental effect as well. You know how I perceive myself. There's a sense of maybe feeling stuck or, you know, feeling like a burden to others. And that's all things that I think I'm sure you can relate to as well in terms of working through those perceptions of yourself and that, you know, having a disability affecting you in both a physical and mental way.
Ben [00:07:54] It's still something I'm I'm working through to be more comfortable being social. I think I've always had been a bit hung up on that, just because, you know, a lot of those environments where that happens are, you know, things bigger events, parties or whatever, where it's just a lot. It's overwhelming. In just a practical sense there's not a lot of lot there's a lot of people talking from different angles and things. And with people not knowing, as I said, it's like a it's a hidden disability. So people not knowing if the best that it's difficult or challenging for people like myself, it can be a bit fatiguing, I think.
Peta [00:08:33] So if we were going to make the most accessible space for you, what would that look like? What's good access for you? Ben?
Ben [00:08:45] They're the big ones, like having bright lighting in the room. When it comes down to doing, doing work or whatever, there's, you know, things like having large texts and digital copies of writing and having marked stairs and clear signage. The computer I use has the capacity to zoom in and out and enlarge text on its own.
Peta [00:09:09] When I was researching your condition. It seems quite paradoxical to me. On the one hand, it's a super rare condition, but on the other it's also genetic. And your siblings also have the same disability as you. How do you feel about that in the fact that you do have this really rare condition, but also it's so common to you having two other people in your life every day have the same disability. What's that like?
Ben [00:09:45] Yeah, there is a bit of a paradox in that. And you're right, it's a pretty rare disease. But both of my brother and sister have it too, which is very rare. My parents both had the recessive gene for RP, so neither of them were affected by it, but both of them carried it, which meant that I think it was a one in four chance of each of us inheriting the disease. And all three of us getting it. It's just a super slim chance. And hopfully I'm getting all of that right. Shout out to my high school biology teacher, Mr. Paoli. He'd be disappointed if I messed that up.
Ben [00:10:22] When I was much younger. It wasn't even really something I recognised as affecting me that significantly. I think that's partly because my vision, you know, hadn't degenerated too much at that point. But in a large way. I think it's it's because of my parents and how supportive and on the front foot about making sure everything was accessible to me. They were that's that's a huge luxury to have in that support system. And that's something that I'm always really grateful for. And I think it's important to acknowledge my privilege in that way of having them around. As I got older and my vision began to get worse and I started to recognise it as a bigger part of my life, I think I started to see it as maybe more of a burden and being confronted with the idea of, you know, losing your vision over time and potentially losing it all. I mean, the future is a lot to put on someone, particularly at that age. As I got older into being a teenager is when it started to click and I started to learn more about what it meant to have a disability and how it affected me and how I then need to advocate for myself and be assertive. Where I stand now is much more accepting. I try to be more accepting. That's something that myself and my siblings recognise and almost live by. At this point in that we are who we are not despite our vision but because of it.
Peta [00:11:52] I think it would be remiss of me to not ask you what it's been like to try and get employment after university. For me, it was super, super difficult. So I'd really like to hear from you. I'd like to hope that people would see how amazing you are because you are amazing and would of course want to give you a job. But what's that process been like for you?
Ben [00:12:18] I've certainly had a tumultuous time finding work and it's definitely been, you know, reflected in the jobs that I did end up having. My first job was delivering junk mail pretty much when I was 15. Then, you know, I worked briefly in a falafel restaurant. Pretty much just handing out my resume, my left, right and centre, and just trying to find any time, any type of work really. I landed a few interviews, often a few leads here and there, but on more than one occasion I was pretty much told that they didn't have the capacity to take on someone with vision impairment. Which is really disheartening because, you know, at that time you're seeing all of your friends get work and start to make money for themselves. And it felt like I couldn't be as independent as them because I couldn't get work. The worst of it was probably a job I had recently. Stocking shelves at a supermarket. There was a whole thing about not providing an opportunity to disclose that I had a disability in the application and then me having to arrange a meeting with them in my own time to talk to them about it, which seemed like progress would be made there. But they became less receptive to it over time and barely gave me any shifts after that or offered any support. But I'm in a much better environment at the moment and I'm I'm really fortunate to have stumbled across that.
Peta [00:13:46] How can sighted people be better allies to your subset of the disability community?
Ben [00:13:55] People aren't sort of prepared or have the instinct to recognise a visual impairment. So that's something that needs to change just by raising awareness and building education. But once you get past that barrier and you know someone is visually impaired, it's just about talking to them and communicating. I think people approached me and phrase their questions with, you know, not to be nosy, but what can you see here or how can I help? And I don't think that's being nosy. I think those questions are great. I appreciate when people ask, you know, do you want to take my shoulder through this room or do you want me to turn the lights on in here? Are you comfortable in this space? Because you know those things I'm going to have to confront eventually anyway. I'm going to have to advocate for myself in those those contexts at some point. So that awareness and consideration is how people can be better allies, I guess. I'd love to be able to encounter more of those people. And that just comes from how people are raised and educated.
Peta [00:14:58] Regular listeners would have been waiting for this question. So I'm going to ask it to you, Ben. Is there anything you like or even love about your disability?
Ben [00:15:11] I think it's important to find and acknowledge things that you can appreciate or like about having a disability. That's quite a general statement and one that comes from a point of privilege of having one myself that hasn't progressed. To to a point of severity where I don't have any vision. So I'm only speaking from my own experience here. You know, I like having a different perspective than others on life. I think I think that's the biggest thing. And to answer the question, people with disabilities are afforded the experience of of understanding life and understanding what others go through in a very specific way that others probably can't comprehend without living it.
Peta [00:16:01] And because I'm all about being frank and even. I also want to ask you the opposite side of the coin. So is there anything you don't like about having a disability?
Ben [00:16:13] Something that comes to mind is having to having to have given up or let go of things I enjoyed doing. I played team basketball in early high school and I remember being so anxious about playing and messing up because I wouldn't say something or not seeing the ball coming to me or letting the team down. And there were games I had to sit out because it would get to a high school gym and it wasn't light enough for me to see. And so it's just an accumulation of that. And I stopped playing after two seasons just because I couldn't do it. I couldn't keep up with that sort of competition and with that little eyesight. So I guess it's sort of an exclusion thing that that can be the most challenging thing. But there's a big, big part of me still that's concerned with how I'm perceived and that sort of relates to and to that exclusion and that having to have to change sort of how you go about things so that my actions might commerce come off sorry, is clumsy like I was saying before or or looks like I'm I'm not able to do something like playing sport or whatever but you know without the context of visual impairment, I'm really aware of, of how that looks. And that's something that I'm I'm still dealing with and processing and understanding, I think.
Peta [00:17:30] What do you hope for the future of people with disabilities?
Ben [00:17:34] Another huge question I really appreciate is because these are such an important but um I think we're really fortunate to live in a time when science and technology is evolving pretty rapidly and there are new resources and things to support us through life and day to day. For me personally, to answer this question in a quite selfish way, the future for my disability has always been associated with the potential for a cure or treatment for RP. And I try not to live my life with the expectation that that's going to come to fruition. So looking ahead, it's also about wanting a society where inclusion and accessibility are at the forefront and wanting stronger education and awareness. So we're surrounded by people who who are more willing or or more likely to help.
Peta [00:18:29] Thank you for listening to this week's episode. Whether it was your very first one or you're a seasoned regular. Thank you so much. I really appreciate all the support. You can also follow me on Instagram. My handle is at Peta Hooke. I share my life and show what it's like for me living with cerebral palsy. You can also send me an email. My email address is icantstandpodcast@gmail.com. If you have a suggestion for a guest or a question for a future episode. It's such a pleasure to be back. Until next week. Have a good one, guys. Bye.
[00:19:11] I'd like to pay my respect to all Aboriginal and Torres Strait Islander cultures, but especially to the Bunurong people where this podcast was recorded.