Stargardt Disease with Erin - Australia and New Zealand

Flic: We acknowledge and pay respects to the traditional custodians of the lands on which we record  and especially to those who may also be living with a disability.  Welcome to another episode of the Sunflower Conversations  where we will explore a variety of disabilities,  the way in which people experience their disabilities  and discover the opportunities for society to make access and inclusion improvements for everyone. My name is Flic Manning and I'm your host. 

 Flic: Hello everyone, I'm Flic Manning and like many of the guests on the Sunflower Conversations, I too have a variety of hidden disabilities like Crohn's disease, Lupus and Reynaurd’s syndrome. My guest today is Erin Philpot, a wonderful person in our community. Erin, welcome to the show.  

Erin: Hi, thanks for having me.   

Flic: Absolute pleasure. Now Erin, you were diagnosed with Stargardt disease as a teen, I believe. How did that shift your world at the time? 

Erin: Diagnosis was tough. It was tough to handle.  Like I said, I was 16 at the time and  I thought I was bulletproof. So the words that were used were, you're  most likely never going to be able to drive. You'll be blind by the time you're 20.  You'll have to make some huge adjustments,  you know, as you get older.  So my impression of that was to really prove it wrong, because I thought I was bulletproof and I was such an active sort of girl, young girl, in high school. I was a class clown. I used to love making people laugh. I tried to be as normal as I could. Sort of receiving that information at the time was tough to handle.  And I think there's probably been, it was such a long time ago and now that I hope there might be some changes to the way that that type of information is delivered to a teen. 

Yeah, I think I just used it to prove them wrong. I got my license, I pushed, I did everything as normal as I could, participated in normal sport, able-bodied teams, that type of thing. And my  symptoms remained pretty minor, mild at that time until I was probably about 21, did the symptoms really start to  force me to make some adjustments. So yeah. 

Flic: Yeah, that's as a person also diagnosed with my stuff in teens, I completely understand what that experience is like when your… it comes down on you like a gavel from above just smacking you down. And it's a pretty horrible experience to go through when they lay out your life, as if it's just a designed plan that you have to live with. I completely resonate with that. 

So what's your day-to-day life like living with your hidden disability, I guess, especially when others can't always recognise what you're dealing with.   

Erin: Yeah. So, um,  it's, I've got a five-year-old, so I'm a mum of a little girl. She's five.  Um, and  until it, until it does affect me, if that makes sense, it doesn't. So I'll get up, spend my morning with her and, and, um,  be as normal as I can. Like I said, a modern mum of a five-year-old, she's very sassy, a little pocket rocket. I guess everyone says that she's  just a mini me. We're just pretty full from about 6 AM.  My experience changes as to whether I need to go into the office or not. Obviously,  I did get my license, but I lost it. Again, it got taken off me when I was 21.  I have been without a license since then and it rears its head here and now. When I was pregnant, I was like, gosh. 

Again, I don't have my license. How am I going to do this without my license? I'll face that in my day with her. If I'm having to get her to childcare, I'd have to get onto the bus. If I flag the wrong bus down, if I miss the bus, if  I'm out of my routine, it just ruins the pattern of our day. It can really affect my mental health as well. I'm really lucky that my  workplace understood I'll get there when I can type of thing. I do put a lot of pressure on myself to get there when everyone else gets there. And that's sort of something I do to myself. I shouldn't do that.  But there's definitely some challenges, especially with public transport.  It feels like you're always relying on someone else's time, not your own. Like you can't be like, Okay, I've got that ready. I'm just going to jump in the car when I'm ready and I'm going to drop her off and then I'm going to come into the city and I'm going to get a parking spot. I'm going to do this. It's all on my time. It never feels like that for me. It's either I'm relying on a taxi and if it's raining, there's no taxis in the area. So there's no taxis. Or, we're late because we're waiting 20 minutes for a taxi or,  and then Uber, there's no Ubers in the area or whatever. 

Also those drivers can sometimes not understand the circumstance and I have had some uncomfortable experiences in that where they've either canceled the trip because it's not long enough, but it's raining and I need to get my five-year-old to daycare. And they're like, well, it's not a long enough journey for me to really benefit from it. So I'm going to cancel it and I've got no choice.  Because I have a taxi subsidy card,  I did get given one of those probably only about five years ago. I've had taxi drivers ask whether it's my card. They don't believe that it's my taxi subsidy card because I don't appear to be that stigma of being blind. I don't carry a cane, I don't have a guide dog, but I am legally blind.  Day-to-day coming into the office,  recognition of people is really hard. If people wave to me or call to me from across the office, if they're not saying,  hi Erin, it's so-and-so, I would 90 percent of the time not have any idea who's waving to me.  It's often perceived that I'm vague or rude if  they don't know my circumstance, so that can be challenging.  Our desks are hot desks, so you don't have the same desk every day, you have to book it. 

So you need to locate the number on the desk in the building. The buildings are huge and there's  a lot of people in the building. So I'll often get lost and walk up and down the aisles trying to find the number of my desk and sort of struggle with that. I've thankfully been able to assign myself something ongoing. So I'm not placed in that situation anymore. And that's an adjustment that my workplace made for me, which has been fantastic for me because it can be a confronting situation, a little bit even embarrassing at times, well I perceive it to be because,  you know, I want to be normal. In what my head thinks is normal, I want to just sit down at my desk. I want it to flow perfectly. I want to get in the car and drive. I want my little girl to see me the same as, you know, all the other mums at school and that type of thing. So what I guess I'm trying to say is any sort of small bump can often affect the whole pattern of the day, if that makes sense. Yeah, it can get you down. But I'm really happy at the moment to be involving myself in advocating for change in that, like being a voice for those who might be in similar circumstances, especially those, you know, mums or whoever, women coming into work, people working full time with a disability or have accessibility requirements. I've sort of made myself a contact at work where they can come to me for those types of things and be comfortable to share. I can liaise with people in culture or our technology teams to provide the digital adjustments that are required and that type of thing.  I guess I'm using that to make my situation more positive.   

Flic: That's great. It  sounds like for what other people might consider to be just a tiny little bump in the day or one tiny change in the routine has such a flow on effect that a lot of people might not realise. And like you're mentioning before it, there's a lack of control and a lack of flexibility,  um, to a certain extent too, because you are relying on, as you mentioned, the taxis and those sorts of things. I'm glad though that your workplace has made that accommodation for you because I can imagine just even the frustration of using that time and capacity trying to find your desk. It's just not a good start to your day. That's just not how you want to start your day. You know, can imagine then that the mental pressure that that likes you on when everything then, you know, it gets changed accordingly.  

Erin: It's true. You finally sit down and you've sort of spent all that time. You know, doing all those things and you finally sit down to start your day and you're just wrecked already and it's only 8.30.  

Flic: Yep. Um, you also mentioned of course, that you do do some advocacy and I did want to ask you about that. So can you take us through a little bit about what that is for you, how you got involved in that and, um, and what drives you to do more of it?  

Erin: So like I said, yeah, my diagnosis was hard to swallow. Um, sort of words like. You're not going to get your license. You'll be blind by the time you're 20, that type of thing. There'll be adjustments. And I spent a lot of time in denial and pushing to prove them wrong.  And I think my experience, whether it's been firsthand  or, you know, seeing others around me in my community,  that the experience of our world and some of our communities, our workplaces, our schools, our whatever it is, is not always made accessible and I sort of stopped and it was an almost like an out of body thing where I was like, I may have been experiencing it for this long and I've sort of just denied it and forced to do it the normal way. But I've experienced people sort of around me and lately, you know, being more mature, potentially a little bit older who are facing things where, you know, technology, it's not equitable. It's not the same, you know what I mean? They can't access, for example, everything is on applications and applications, digital applications aren't always made accessible for people's phones where their settings are set for blind people or communications aren't made audible for those that can't read or for those that these adjustments aren't sort of put into the design of a company or an event or a community, whatever it is, it's  not built into design. It's added at the last minute as an afterthought and as a question. Whereas an  adjustment or an accommodation should be a statement, not a question.  It just should be available.  If you need it, you can put your hand up and ask for it rather than, it'd be too late and you'd sort of be sitting in a meeting or sitting at a P&C at your kid's school and being like, I can't read any of what's on that board or I missed that email or I missed that letter because of these reasons and therefore my child has missed out on something or I don't feel like I'm working at my best because the appropriate adjustments haven't been made for me or they haven't been available from day one type things. 

I feel like I just changed. I saw people needing those adjustments or I sort of thought, well, what about them, you know, what do they say? One in five people with a disability, how are we catering for those, for those people for my community? And the answer is often that it's not a consideration at all and not that I think there is any malice. It's just not potentially a consideration because not everyone has that lived experience. Therefore they just go ahead with the design of something without considering those adjustments or those small accommodations. When people think that accessibility is only for people with disability,  they're just completely wrong. It's for everyone. You find it in that text messaging was made for people who are deaf and can't listen to phone calls.  Audio books were made like these adjustments. They're for everyone. They benefit everyone. I have found myself in this, at the moment, a volunteer role as a chair of  an employee-led committee here.  And we advocate for those with disability, accessibility requirements, for neuro inclusion, and for carers in the workplace as well. And  we use the power of storytelling. Obviously,  initially, I shared my personal story and people were like, wow,  we had no idea. Obviously, they didn't because it's an invisible disability and that's why I sort of wear my sunflower lanyard as almost like a little way of identifying it, but  nothing really out there, which is not how I personally want to sort of  identify my disability. I don't hold a cane and I don't have a guide dog at the moment. And maybe there might be a time where I will need those things, but it'll be on my terms when those things are needed. And in the meantime, I have learned that it is an identifier in the workplace  and I'm trying to socialise that  to help my community here in my business. But I'm just trying to involve myself in every conversation I can. I'm asking the question in every room that I can, in every meeting, in every forum at my daughter's school,  in the communities that we're involving ourselves in. How are you making this accessible? How are we catering for those with disability, the parents that were also carers for their parents and that  type thing.  Are we making these considerations along the way?  I think getting in people's faces and rattling cages and not stopping is where I'm placing myself at the moment. I'm proud to have been part of a lot of positive changes, but there is so much to do and so much to change and so much to consider. 

Flic: Hmm, absolutely. I mean, you're doing some wonderful work and there's so many beautiful people from our communities that, you know, get out there and try and actively make change. And I can hear the passion that you have for it. If you could identify, for example, two barriers that you face based on just how the world currently exists, what are two barriers that could be removed that would make a big difference for someone like yourself day to day?   

Erin: I think for me,  the most common misconception or perception is that I personally, I don't look blind, therefore I fly under the radar a lot of the time until I choose to share the information. I mean, and I was going say that's the socialisation of this program, the Sunflower program, or just socialisation of invisible disabilities, hidden disabilities around communities, workplaces, et cetera, for me,  would remove so many barriers for me personally. 

Because  I mean, at the moment, the interaction can at times feel a little embarrassing, which I said before, and that's just a personal feeling.  And it's often noticed that  people think that maybe I'm a little bit slower in unfamiliar locations or slower to recognize people,  read signs,  bus numbers, et cetera. So it's sort of  that they're more aware and there's an understanding of that not all disabilities are visible,  that everyone's experience is different.  And being aware of those differences,  I think, it would remove so many barriers for me. Yeah, adjustments and accommodations are a question. So you ask it later on that we're not building it into the design of things is a huge misconception or perception. And by removing that it would remove so many barriers, you'd have so many cool people with disability, attend your events, be in your workplaces, whatever, be really confident in your community because you're making it accessible from the very beginning. Being aware of unconscious bias and stigma, so don't make assumptions. Everyone's experience is different and seek to understand. Just because a person has a disability does not mean they aren't cool. So… 

Flic: I love that. 

Erin: I always start that. I'm like, yeah, I'm, I'm legally blind, but I'm 36. I'm a modern mom. love to go and have a wine. love to dance. love music. love going out. Why can't I do all those things just because, you know, I don't have a driver's license. I'm legally blind. You know, I can't read some things. I'm a little bit slower. I'm pretty cool. So make it accessible and we'll come in droves. All these cool people will be there.  

Flic: 100 % behind that. Oh my gosh, Erin, 100%. That is a battle cry for all of us. Absolutely.  I think if anything, we can take away so much from the time that we've shared together today, Erin, and I so appreciate your sharing of your story and, um, and just, you know, the, the point of view, I guess, that you have on your experience, but on, on the world. And I think all of us can learn from that just to not make assumptions, um, to allow people to be truly included means all the cool people get to come along  and the world would be so much better for it. So thank you so much, Erin, for spending some time with me and for sharing your disability experience with our audience too.   

Erin: Thank you so much for having me.   

Flic: Thank you for joining us for another Sunflower Conversation.  Please keep the conversation going via our website,  hdsunflower.com/au on Facebook @hiddendisabilitiesANZ  or an Instagram @hiddendisabilities_ANZ.