Introduction to Erin's Journey

Speaker 1 0:03

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 Flick Manning and I'm your host . Hello everyone , I'm Flick 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 Renard syndrome . My guest today is Erin Philpott , a wonderful person in our community . Erin , welcome to the show . Hi , thanks for having me . Absolute pleasure Now . Erin , you were diagnosed with Stargardt disease as a teen , I believe . How did that shift your world at the time ? Diagnosis was tough . It was tough to handle . Um , like I said , I was . I was 16 at the time and I thought I was bulletproof . So the words that were used were you know , 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 , high school I was class clown , I used to love making people laugh , I tried to be as normal as I could , so 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 I 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 , yeah , that's .

Speaker 1 2:36

As a person also diagnosed with my stuff in teens , I completely understand what that experience is like when you're 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 like as if it's just a designed plan that you have to live with . So 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 recognize what you're dealing with . Yeah , so I've

Diagnosis and Teenage Defiance

Speaker 1 3:15

got a five-year-old , so I'm a mom of a little girl . She's five , and until it does affect me , if that makes sense , it doesn't . So I'll get up , I'll spend my morning with her and be as normal as I can , like , I said , a modern mom of a five-year-old . She's very sassy , a little pocket rocket , and I guess everyone says that she's like just a mini me , so we're just pretty full on from about 6 pm .

Speaker 1 3:41

So 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 . So I have been without a license since then and it sort of rears its head here and now . So when I was pregnant I was like , oh gosh , again I don't have my license . How am I going to do this without my license ?

Speaker 1 4:02

I'll face that in my day with her . If I'm having to get her to to childcare , I'd have to get onto the bus . And if I flag the wrong bus down , if I miss the bus . If I'm out of my routine , it sort of just ruins the pattern of our day and it can really affect my mental health as well . So I'm really lucky that my workplace sort of understood I'll get there when I can , type thing , and 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 .

Speaker 1 4:37

I shouldn't do that , but there's definitely some challenges , especially with public transport . So 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 , you know , 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 , we wait , you know we're late because we're waiting 20 minutes for a taxi , or and then Uber there's no Ubers in the area , or you know , whatever those .

Speaker 1 5:15

Also , those drivers can sometimes not understand the circumstance and and have had some , you know , uncomfortable experiences in that where they've either cancelled the trip because

Daily Challenges with Transportation

Speaker 1 5:27

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 . Or I've because I have a taxi subsidy card that I did get given one of those , probably only about five years ago . I've had taxi drivers ask whether it's my card , like they don't believe that it's sort of 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 . So so , yeah , day-to-day coming into the office uh , recognition of people is is really hard . So if people wave out to me or call to me from across the office , if they're not saying hi , erin , it's so and so I , I would 90% of the time not have any idea who's waving to me . So it's often perceived that you know that I'm vague or rude if no one , if they don't know my sort of circumstance . So that can be challenging .

Speaker 1 6:31

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 , you know , get lost and walk up and down the aisles trying to find the number of my desk and sort of struggle with that . Obviously , 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 .

Speaker 1 7:11

I perceive it to be , because I want to be normal in what my head 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 all the other mums at school , and that type of thing . 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 , and , 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 sort of come to me for those types of things and be comfortable to share , and I can liaise with people in culture or our technology teams to sort of provide the digital adjustments that are required and that type of thing . So , um , so yeah , I guess I'm using that to make my situation more positive . That's great .

Speaker 1 8:27

I mean , 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 , is actually has such a flow on effect that a lot of people might not realize and , like you were mentioning before , there's probably a lack of control and a lack of flexibility 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 . It's just not how you want to start your day and I can imagine then the mental pressure that that places you on when everything then you know gets changed accordingly . 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 .

Speaker 1 9:28

Yep , you also mentioned , of course , that you do do

Workplace Barriers and Accommodations

Speaker 1 9:31

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 what drives you to do more of it ? So , like I said , yeah , my diagnosis was hard to swallow , 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 our communities , our workplaces , our schools , our whatever it is is not always made accessible . And I sort of stopped , and it was in 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 . The normal way . But I've experienced people sort of around me and my lady , you know , being more mature , potentially a little bit older who are facing things .

Speaker 1 10:36

You know technology , it's not equitable , it's not the same , you know what I mean . Like the , they can't access , for example , everything is on applications and applications . Digital applications aren't always made accessible for for people's phones where their settings are set to , for blind people or um . You know , communications aren't made audible for for those that can't read or , um , for those that are dead . These adjustments aren't sort of put into the design of um , you know , a company or an event or a community , whatever it is . It's . It's not built into design .

Speaker 1 11:15

It's sort of maybe 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 and if you need it , you can put your hand up and ask for it , rather than it be too late and you sort of be sitting in a meeting or sitting at a pnc with your kids school and being like I can't read any of what's on that board or , um , you know , 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 , you know , working at my best because the proper adjustments haven't been made for me or they haven't been available from day , one type thing . So I feel like I just changed .

Speaker 1 12:07

I saw people needing those adjustments or I sort of thought , well , what about the ? You know what do they say ? One in five people with a disability , yeah , who ? How are we catering for those , for those people , for for my community and and the ? 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 you know those just small

Becoming a Disability Advocate

Speaker 1 12:40

accommodations , like when people think that accessibility is only for people with disability . They're just completely wrong . It's for everyone . And you find it in that text messaging was made for people who are deaf and can't listen to phone calls , right , and audio books were made like these adjustments . They're for everyone , they benefit everyone .

Speaker 1 12:59

So I have found myself in this at the moment , a volunteer role as a chair of an employee-led committee here , and we sort of 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 . So obviously , first , initially , I shared my personal story and people were like wow , like 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 my lanyard that is an identifier in the workplace and I'm trying to socialize that sort of to help my community here in my business .

Speaker 1 14:09

But I'm sort of 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 ? Did we consider the parents that were also carers for their parents and you know type thing ? And you know , are we making these considerations along the way ? And I think getting in people's sort of faces and being rattling gauges and not stopping is where I'm placing myself at the moment and 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 , yeah , so much to consider . Absolutely . I mean , you're doing some wonderful work and there's so many beautiful people from our communities that get out there and try and actively make change and I can hear the passion that you have for it .

Speaker 1 15:12

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 , I think for me , the most common misconception or perception is that me personally , I don't look blind . Therefore , I fly under the radar a lot of the time until I choose to share the information . So I mean , and I was going to say that's the socialization of this program , the Sunflower Program . I mean , and I was going to 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 I people think that maybe I'm a little bit slower in familiar , unfamiliar locations or slower to recognize people , read signs , bus numbers etc . So it's sort of that there are 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 would remove so many barriers for me . But yeah , adjustments and accommodations are a question , so so you ask it later on .

Speaker 1 16:44

That we're not building it into

Breaking Down Misconceptions

Speaker 1 16:46

the design of things is a huge misconception , perception and if removing that 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 . Um , being unaware of , 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 I love that .

Speaker 1 17:19

I always start that . I always I'm like , yeah , I'm , I'm legally blind , but I'm 36 , I'm a modern mom , I love to go and have a wine , I love to dance , I love music , I 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 .

Speaker 1 17:38

So make it accessible and we'll come in droves . All All these cool people will be there . 100% behind that , 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 just you know the point of view I guess that you have on your experience but on the world , and I think all of us can learn from that . Just to not make assumptions , 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 . Thank you so much for having me . Thank you for joining us for another Sunflower Conversation . Please keep the conversation going via our website , hdsunflowercom . Forward slash au on Facebook at Hidden Disabilities ANZ or on Instagram Hidden Disabilities underscore ANZ .