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Episode transcript

(Un)marginalised: S1, E5 with Julie G. – Episode Transcript

“Shalom everyone, I’m Liel K. Bridgford, and this is (Un)marginalised. My next guest is Julie G., a disabled woman from the united States of America. Julie is a care coordinator, and a mother of two. Before we begin, please note that the next episode contains references to ableism and body shaming, so please take care as you listen. So Julie, to start our conversation off, do you want to tell me and our listeners, which intersections of diversity do you identify with?”

“I identify with you know, being disabled, and um, growing up very poor. And not having access to good medical care and um, not having any education to point us to a direction, for you know, help with the disability. So being poor is a problem. And, even though there are options out there that may or may not pay for, specialists, if you don’t have the education you know, available to the person, I mean to the family who you know, works night times, sleeps all day, and doesn’t have time to go call you know, the social services to find out what, or even that you can.”

“Yeah.”

“So how do you reach that? You know my mum was, she was a single parent in the seventies, laughs.Still, not a good thing, you know, so.”

“Right.”

“So um, grew up away from her family, um, you know she raised me with my elderly grandparents, so she had to care for them, and me, and you know, here I am, disabled, and she’s trying to figure it all out. She’s got a high-school education, someone who probably needs guidance, you know, you would think. You know in a hospital, like now, I feel that there’s social workers in hospitals where you have babies, that would point parents to directions. But in the seventies, that may have not been a thing. And it may have been something, we didn’t know and I still don’t know if that was there.”

“How do you think all of that affected you as you were growing up as a girl with a disability.”

“I grew up with, my mum found services by finding out from somebody else who like, knew somebody else who had a kid that no one talked about. So when I was born, she didn’t know what to do, so she had initially gave me up to the system, in foster care. Cause she didn’t know what to do. She’s like, how do I care for a disabled child, no knowing how the disability was going to manifest itself. The doctors were like,  yeah your kid is not gonna walk. And who knows what else, you know, maybe she’s intellectually delayed, who knows? We don’t know. So but then she decided you know what, I can’t do it, so she got me, and tried to figure it out. “

“Wow. how long were you in the system for Julie?”

“Probably almost the first year or so of my life, in and out. Because I had, initially been placed with different families, but of course you know, no one wants a disabled child. I ended up having a foster family who my mum then kept in contact with. They knew how to like, find services, because they were in the system.”

“Ok.”

“So they steered my mum to a hospital. That was kind of expensive. It wasn’t one like, I don’t know if you ever heard of Shriners, that they would pay for things. Well she didn’t know about that. That, they had one in my state, but she didn’t know about it. “

“Wow”

“So you know, we went to a, you know fee for service, pay as you go, um, billing. And my mum made like minimum wage, co pays were very expensive. So she found a doctor there, who was surprisingly you know, knowledgeable. He told her maybe she’ll walk, maybe she won’t, there’s no way to know. Followed you know. so we would go there every so often to get checked, x-rays, see if things were growing. Everything seemed to be growing so. But again, my mum had to buy two different sized shoes, one big one, one small one. One built up like you, some heavy like wood like build up. You walk around like wow, this is gonna, I’m gonna have a strong leg or I’m gonna throw out my back.” Both laugh.

 “Cause obviously I did walk, I learned how to walk. The thing about disbaled people I find is the interesting ability to adapt. What a typically abled person would be able to do, is, you know, and the way that they do it, you know is a model for how we might do it, but we figure out the way to do it for us. So, it’s normal for me to walk how I walk.”

“But I absolutely agree, just because of the absolute necessity, that you know, the services and the supports not there, and we just have to adapt. Physically, emotionally, psychologically, with everything. You know that’s really so good that your mum found that family that family, that were able to direct her into a service that was able to give some kind of support.”

“I mean something is better than nothing. So that’s kind of like why I was drawn to my work, to what I currently do. I’m a care coordinator and I tell people who elderly disabled, from birth to a hundred and whatever, what services are available in the community, and what is supported by your insurance, what is community supported, and what charities do what services for whatever your individual disability might be.”

“You’re doing this work, that you’re almost correcting what wasn’t there for you and your mum.”

“It’s true. I find that I’m very unsympathetic to people who go oh, I didn’t know. And I’m like really? It’s 2020s, like what is not on your iphone. Do you not, tell me then. If you know me, I’m gonna tell you what you need to do or where you need to go. I’m not a big fan of people who, say panhandle. You know what panhandling is?”

“What does that mean? Tell our listeners in case someone doesn’t know.”

“You know people who say would hold up a sign saying out of work, or you know disabled need help. And I’m just like really? Are you kidding me? There is a shelter, there are multiple churches who will pay for you to get a hotel until you get something, social services who if you’re a minor, you’re not going to be homeless. You’re going to have all of your needs provided. And I feel like you just want my money. I was walking into a restaurant and someone’s like can you spare money? And I was like are you kidding me? What do you need, tell me what you need. They’re like I need help. And I was like do you really want me to help you? And they’re like yes, and so, how old are you? And they’re like well, you know I’m sixteen. And I said ok and I called um, child protective services. And they were mad about it.” laughs. 

“Oh really?”

“They were trying to just get money. They didn’t want help. And I’m like look, if you ask me for help, this is the help that you’re going to get from me. You are going to learn how to help yourself.”

“And sounds like, I mean, what I’m reading between the lines a little bit Julie. Is that you’ve had to kind of help yourself so much. And I know what it feels like, we share, um, in case our listeners kind of didn’t maybe catch on that, we share the same medical condition that we were born with. But sounds like it sort of leaves you feeling really, um, maybe a little bit angry about some people not taking the effort?”

“Yeah, if you are able-bodied, with two good feet, two good legs, why are you not working? Because I know that there are jobs out there for you. And if you speak a different language, well good for you, you’re bilingual, you’re one up on everybody else. People need community supports to get them to a point where they can help themselves, and that’s fine. They don’t need community supports if there’s something for them to be able to help themselves, to find their own answers.”

“And I’m wondering about, when you do the work, do you ever talk about your experience with your clients, or the people that you support?”

“Not even one time.”

“Really?”

“No. I always find that people don’t want to hear about your troubles, as much as they want to tell you their own. So I don’t. And typically it doesn’t come up. Um, if someone says to me oh why are you limping? I’m like arh, at my age, I’m like arthritis, cause that is not a lie. Like why are you asking me why I’m limping, did I fall on a hole? I don’t know, I don’t ask you why you, well I already know cause I. No one asks anybody else typically you know so how are you. When they say how are you, they don’t want to know how you are.”

“No” laughs.

“It’s like a hello. If I said you know what my back hurts,”

“Exactly”

“I got limb discrepancy that throws out my back, a couple of surgeries, what do you want. What are you looking for, oh just a hellp, oh ok. “

“A hello or to ask you why you’re limping. Because my limp is kind of changing, and you might have the same experience, like sometimes I limp more than other times, depending on pain levels and whatever.”

“Depending on the day”

“On the day. So sometimes if I know people who don’t know about my disability, then I limp one day and they notice it, and they’re like oh, what happened? Laughs. And I just think, ah, I was born, that’s what happened. laghus. “

“What happened, like a shark ate my foot. I don’t know. Like when I was a kid I would just lie and say shark, you really need to watch yourself in the water.”

“Oh I love that, that’s great. And tell me about, you mentioned with the kids, I guess that’s what you use to tell kids. And I love that response. So much better than miy responses, which were kind of non-existent or I would try to explain myself and say I had a leg problem, and I’m putting quotation marks around that, cause that’s what I was told, that I had a leg problem. And that’s how you know, you can understand, how you internalise yourself as being a problem.”

“Yeah.”

“Tell me about growing up I guess with other kids, with your peers, what was that like, being a girl with a disability who didn’t have enough supports as well in terms of medical and other services.”

“Well, I grew up with a bunch of other poor kids. You know, in our area of Pennsylvania. It was very rural. Everybody was like a farmer or worked at a steel company. You know, no one that I went to elementary school with had any money. You don’t really know that you’re poor when you’re a kid except for at christmas when Santa doesn’t like you as much as the other kids right? Oh he likes that kid better, oh I really, well he must not like the disabled kid. “

“That’s what you used to think?”

“Well who knows, why would santa not want to bring me a toy? But some other kid gets 50? I  didn’t even get socks. I’m like what the? Wow. And I’m not even bad, I wasn’t even a bad kid, I’m like I might just go start setting fires or something, you know? Laughs. 

“yeah, might as well enjoy it.”

“You know, obviously gym class, not a big fan. Still not a big fan. And because I grew up like hating that kind of thing, I’m still not a big fan of the group sport. You know, always the last kid picked. So always fun, letting people pick their own teams that. Never good letting people pick their own teams, you know I think that instructors should just evenly have teams picked, so that people don’t feel bad.”

“So you did participate, like you obviously didn’t like the gym class, but you still participated. You still kind of, were expected to participate like everyone else?”

“I was expected to participate because, when I was a kid of course my mum didn’t know, or if there were IEPs, she didn’t know how to get one. No one said anything. Special needs gotta do gym class because that’s the law.”

“Mmm, that was the law. Ok. “

“You gotta take PE. oh why, why do I have to take gym, why do I have to take gym class, I’m getting pelted with balls, which by the way, I’m not a big fan of the ball, not rubber or otherwise.”

“Me too Julie!” Julie laughs. “I have had a ball phobia almost my whole life” laughs. 

“If you have a ball around me, I’m going the other way.”

“Seriously, that is incredible, I feel so validated knowing that I’m not the only one who hates balls. Both laugh. Honestly, like any ball within like 100 meters from me, I’m like ah, it’s gonna hit me.” laughs. “And it’s gonna hurt”

“All of them do, like somehow they find me and get me. Because I can’t get away. I’m not catching a ball. Liel laughs. I’m trying to get away from the ball, right?”

“I know, my two and a half year old can throw a ball and catch it way better than me.” Laughs.

“Of course.”

“I love this conversation and I’ll tell you why. Because some podcasts and stories out there about, you know the famous disabled people are usually like Pralympians, you know? And that’s great, good for them, but some of us, that was, you know, a lot of us didn’t have that experience. You know a lot of us.

“A lot of them had resources, doctors who made good choices about surgeries that they may have had. Wheres us, me, they were experimenting, they’re like lets see if this works. This might work, I mean what are you gonna do, I can’t mess it up anymore. So you know, kids are mean, you know, I’m still not a fan of the big tough girls.”

“So I’m really curious Julie how you went from, cause I mean we haven’t talked about that yet, but you’re married now with two adult children. But how did you navigate sort of the I guess, getting into the romantic world, all of that kid of area that starts in adolescence which is such a hard time for most people as it is, what was that like?”

“In high school, like I didn’t have my first date until i was in eleventh grade, I think. And only because, well late grower, late bloomer, no boots until like you know, maybe twenty. Always skinny, always, you know wanted to always have like cute hair, tried to wear clothes that like the rich girls wore you know, or at least what you can buy at like walmart. And so I got a summer job. There was a program in my community, and I don’t know what it was. Because I didn’t come from a lot of money, you know they had these summer jobs to try and give you a skill. You know, cause poor, probably not smart, right? And you know, the weird feet thing. You know I had glasses, I had braces, you know, the hideous foot, so you know, hideous child. So.”

“I disagree, but that’s how other kids were viewing you. And in high school that’s really a harsh time in judgement.”

“Yeah. I got a job, I paid for contact lenses, got the braces off, and bought cuter clothes. And two pairs of shoes. Like a pair of snickers to fit in at gym class. And a pair of brown shoes for everyday, that would you know, deal well with my hand made, cause I wasn’t doing the whole shoe thing. I bought like the same size shoes, I think one foot would be a size three and one would be a size five. You know i’ll just stuff it and we’ll figure it out. As it doesn’t feel good I’ll adjust it. I had to reinvent myself. Then like my school, it was so small that the county then merged two school together. So then suddenly there’s a population of guys who didn’t know me when I was hideous right?”

“Oh wow.”

“So then I started dating, you know the new people right? So not a whole lot of dates in high school, no real big leads there.”

“Yeah”

“But didn’t aim real, you know. So here’s like a weird thing. I did not want to date anybody who would not be able to give my children a better life. So if i didn’t think you had earning potential, ah. Even though I shouldn’t be all that picky. So, went on to college, had some serious relationships there. And each one of them, you know, it was very stressful to tell them my big secret. Because they didn’t know, they just. So i mean i would dae them for months before i would tell them.”

“Really? You were hiding it for months?”

“Yeah, because you don’t know worthy of love that you are. Are you worthy enough to be loved enough to tell someone who would accept you for something quite so hideous, as being born, you know, differently. So it was soo stressful, I would cry and everything before I would like even tell anybody. But, you know, was accepted. So I was like ha, who saw that? Laughs. Right?”

“I have such a similar experience and I think it’s something that maybe a lot of people who don’t have disabilities, able-bodied people don’t really understand what it’s like to kind of have to hide, or feel that you really have to hide. And that comes from all those years of being excluded and bullied and not accepted. And then accepted when you were hiding enough or well enough and passing as an able-bodied person. And that puts so much pressure on you. That would have put so much pressure on you as a young person in college, just dating, figuring it all out, and then having to also manage that.”

“After you know, I found, I met my husband in college, we got married. I still didn’t tell other people. You know, I would still wear clothing, and jeans, and not. I’m not wearing shorts. And the only way I would say, do I water park, is if you know you would have those shoes that cover your feet, but then you know, having a baby, everyone’s like oh, are you gonna pass your, you know, thing, onto your children. And I’m like, well I hope not, but. So then you know, you do like genetic testing, and suddenly someone says oh you have this. This is the term for what you have. It’s Fibular Hemimelia. And I’m like ha, who knew? So there’s a word for it.”

“Really? I only found it the name of what I had when, um maybe like two years ago, and it was just by googling.”

“Yeah, no one knew, there’s like no treatment other than what whatever my surgeries were as a kid. I don’t know that there may have been lengthening back when I was a kid, but we didn’t know. Or maybe I was a candidate, maybe I wasn’t. I don’t how that process is to exclude or include people for that process. But now, at my age, I’m like, not gonna do any of those things. Now i’m just trying to get through the day and not fall on the ice.” laughs.

“Yeah” laughs. “Oh I can’t even imagine ice, like i’m really grateful that I live in Melbourne and there’s no, oh well, rarely there might be some hail, but no snow here. And of course, I’ve done, for the record I’ve done probably about ten lengthening and straightening procedures, and they are horrible, so I do not recommend them.” laughs. “And as you say, you’ve got other priorities in your life, and I think that’s such an important point. Right now you want to live your life, and not fall on the ice, and spend time for your work, spend time with your family”

“Yeah”

“Like the last thing that you want is to into an operations that are not necessary, um, and I think that kind of comes to the idea of having to fix us. You know, that people kind of see it that way, but.”

“Last fall I slipped on a wet leaf, and broke a bone in my weird foot. And the doctors that I went to see were like, I guess we’ll just let it do what it does. And I was like, alright. They didn’t put a cast on, so I just had like the soft cast and I would take it off at night. And I just hopped to the shower. Laughs. But literally, slipped on a wet leaf.”

“I totally identify with that. I slip on the littlest things. Like a tiny little puddle, or even like a different surface of the pavement.”

“Do you walk looking down for objects to?”

“Yes! Oh my gosh, I feel that I cannot change that about myself, I’ve done it ever since I can remember walking, I’ve always looked down, because there’s always slipping hazards, and I’ve walked with crutches most of my life, and I’ve slipped so many times with crutches, and on my unstable feet. So I just walk like this, looking down, just to explain to listeners, because yeah. And sometimes I think oh i really wanna look forward, to see, like look up and see what’s kind of, the view. So I have to stop and do that.” laughs.

 “No, I can’t walk and look around, unless I’m holding onto my husband’s arm.” Liel laughs. “Like you can’t grip with your foot, it’s just like.”

“Yes.”

“You’re just walking around, teetering.” laughs. 

“Totally.” 

“And like hoping for the best with each step and you’re like well, you know, I don’t see any hazards, but there could be a rock, or yeah. Not running through the field.”

“Yeah.”

“And also, you know, there could be a bug, so.”

“Even in my own house, I slipped the other day, I slipped on nothing, just the floor. There was nothing on it and I just slipped.” laughs.

“Yeah, doesn’t even matter. Like, but see but no one knows that. You know I threw my back out because, I feel like my limb difference when I have my shoes off at home, is starting to be a problem. So this is where the advantage of maybe having lengthening would be. You know, but at this point. You know, it’s already happened. So now I have to be extremely careful because now, every time I get out of bed I have to pee. I’m like, oh how is that feeling the back.”

“And I’m curious about, when you say no one knows, and we talked about hiding a lot. And we also chatted about your work a little bit. But how has it been with work. Have you found that you had to tell people? Do you feel that the workplace environment that you’ve worked through has been sort of accessible and accepting? Or what’s it been like?”

“With my job, we have a home office. So.”

“Yeah”

“So all of my coworkers are you know, on the other side of a screen. When I get a new, we call them members, I go to their home, and I do their medical assessment, and I tell them what resources are available for their particular concerns, or what we can offer them, or what they can get in the community. And going into their homes, the hardest thing that i find is if they have a front stair with no railing.”

“Yes.”

“It’s really very hard to do. Yeah. But everything else I can manage. And just say you know I’m carrying my briefcase, or whatever, my. But you know, going up those stairs without hand railings. I’m like, who would think of something so horrible?”

“I’m so relieved that someone else feels so strongly about stairs as me. Because I have had such difficult times with stairs, like there have been no elevators in my school when I was growing up. So I had to walk up like stairs of, like staircases and staircases, with crutches, and with a massive leg brace that was heavy and painful.”

“Yeah no one cared”

“No one cared” Julie laughs. 

“Still these days. Like yesterday I went to um, a little town here in Victoria called Queenscliff and I went to like at some art galleries and things. And almost every shop in that town has a step at the entry. And I just find that heart-braking, honestly. For so many people, who like us, either would struggle, and for other people who wouldn’t be able to access it at all. If they prefer to use wheelchairs, or walkers or whatever mobility aids they want to use.”

“Yeah, They’re not getting up there unless someone else helps them do it. And if you’re in a wheelchair, you’re not getting in at all.”

“And for you I imagine, that even, so tricky for you with your work, because obviously people’s homes don’t have to be accessible”

“No, they don’t.”

“But you have to go to do the work. You basically had to push through.

“You just have to adapt. And just a little bit, enough to you know, I don’t need a lot, but I just need a little something to hold onto. Or sometimes I got my hands on my knees and really kinda. But it’s really, it makes me want to punch people in the face really.”

“It’s absolutely unnecessary, you know it’s just as easy to put a little ramp or a, or make a little hand railing at the very least.”

“Just a hand railing, like how hard is that? Like I’ll build it for you if I have to. I mean cost you what, like 500 bucks maybe, and then you make that back by people who could actually come. The thing about being here in the United States is that, businesses are required to be accessible. They have to have a ramp or something. But those ramps, some of them, I’m just like, I’m just gonna take the stairs. I’m not going all the way around to the side to walk up.”

“Yeah”

“I feel like even the ramps are put on as not even so welcoming. I don’t feel welcomed with the ramp. I feel like it’s a, we had to put it on and we didn’t want to mess up the front of our building, so we put it here on the side. And you can go in this entrance. And there’s accessibility here for you, and your needs. But welcome to our shop. And I’m like hmmm.”

“Yeah” laughs. 

“Like really? Just make a welcoming entrance.”

“Exactly, absolutely.”

“You know, not one that you just put on because you know, the state made you.”

“And I mean it is a start, so we will acknowledge that it’s better than nothing, but absolutely needs to be welcoming, and not to be on the side. We have that in some places here too, where there’s a beautiful entryway through the stairs, and then there’s like a sign of a wheelchair to go to the right and you have to go all around the corner to get in. As if you’re like you know, hiding to go in. And I want to go through the front door. Giggles. Through the front entryway, with pride.”

“Like I get passive aggressive and I’m like oh my God, the stairs, right?”

“Yeah.” Liel laughs. 

“Or they go oh how was your visit? And I go argh, you know, I almost fell down those stairs coming you know. They’re not very welcoming to people who are disabled.”

“That’s incredible that you’re even able to say something, I think, you know advocating.”

“Only since I’m old” laughs. 

“Ok  laughs. “Yeah, what’s changed, since you’re old?”

“What’s been very unpleasant is. Like when, when you’re disabled, everybody’s like oh, go to the gym. Go to the gym, oh you can lose weight at the gym. Well you know that’s all nice, that’s great. So good for everybody to be able to go to the gym. But I, I gained like 40 pounds in the last year because I haven’t been able to do anything, you know because of two back surgeries. And then you know it starts to get back up. Losing it. It is not easy to find a way to lose eight with the options that we have to work with. You know, you could do Pilates, and Yoga, if your feet will bend that way.“

“Yeah.”

“So, you know, or people did zumba. And I’m like, I can’t do that kind of like pounding with my legs. Sounds lovely, but, looks lovely for you to zumba all that time, but can’t do that. oh, let’s do the exercise bike. You know I have short legs, one may, you know, be a little shorter than the other one. So now I’m like exercising, you know riding with a limp.” laughs.

“Riding with one side, totally.”

“And I don’t want to stand in here, with you all, while you’re lifting your weights. Because you can only do. Like you can do all these”

“Upper body.”

“If your issues are lower body, if you have something that would affect you arms, then what do you do? But you’ve got to be able to stand for a certain amount of time. You know what I mean?”

“Yeah. Absolutely. Which sometimes we can’t, sometimes we can but it’s damaging. Because what we’re talking about is quite a lot of body shaming, really. And you know, that is, as women, that is something that we deal with so much more.”
“Yeah”

“Like, our bodies are being scrutinised so much more.”

“All the time. You’re not pretty with your ugly leg. Gym workouts, not exceptionally user-friendly. You can get into the gym because there would be a ramp, but what are you safely able to do? You know, and the trainers don’t know. They don’t know what you can do. They’re like, you do a leg press. I’m leg, no. Liel laughs. Are you kidding me? I’m like.”

“Sorry, I laugh because you know, I experienced that stuff too. Of like, able-bodied people, and like trainers, and like exercise teachers, all these people that think they can tell you, and think they know what you can do, and what’s safe and comfortable for you to do. And it’s like, ah, no. actually not. And that pressure. That sounds like a lot of pressure for you, you know, people telling you you should do this, you should do that. And maybe. Firstly, maybe you don’t want to, and that’s a fair choice, especially. But also maybe you can’t because services, or the facilities really, are not accessible.”

“Everybody’s like well go swimming. And I’m like in a public pool, where everybody’s around, you gonna walk in front of them. And they’re going to be like oh look at you, with the leg. Or if it’s easy to get in and out of the pool, fine. But then if you want to get in to the deep end, you either go down like these narrow stairs, you know, and use your toes for support, because you know, cause everybody has those. But if you want to get into a pool, typically you gotta go through the little kids section. And walk through. And I’m like I’m not walking past those kids, I didn’t really like them when I was that age. They’re lovely, I had kids, they’re super. Get into the pool and walk through a bunch of kids asking me questions. And then they go Mumma, what’s wrong with that lady? And she shoes shhhhhhh” Liel laughs. 

“Yes.”

“Shhhh. Why are you shhh? I can hear you!” Liel laughs. “Now like, the kid has just outed me. Just say you know what, maybe she, you know, something hurts, or whatever, but we’re gonna mind our own business. You know, we’re not going to put her on the spot because we are nosy.”

“Yeah, absolutely”

“Or go shhh, because that’s very shaming”

“Absolutely, and it’s also. It implies so many things. It implies that we can’t talk about disability. It implies that you know, what you’re saying is really shameful, and what you’re asking about. And you should only talk about it behind a person’s back.”

“Yeah”

“I think there needs to be so much more conversation about good ways to talk to children about disability, and I’m a big fan of that because I’ve got a toddler too. And, I’ve had the same experience as you with kids, and you know, that fear of being teased again and traumatised again by questions and stares, is massive.”

“And at a certain point you don’t want your kids to be traumatised or shamed because their mother might be weird.”

“So what was it like for you Julie to become a mother? You know we chatted before about the initial reactions from people, shaming you again, and asking if you’re gonna pass on.”

“Again, I’ve learned not to disrobe you know, in public. I signed all my kids up for every single sport.”

“Did you?”

“I made them do everything until they could figure out what they were good at. Which, they weren’t good at a whole lot of sports. They were good runners. So every sport, and they had to have a club. You know in order to play video games or do fun things. They had to. And I made them play an instrument. Because you want your kid to be better than you, and have the opportunities that you may have not had.”

“Absolutely, and that’s incredible that you were able to do all of that for them. You know, provided them with so much, opportunities.”

“And, like I didn’t let my disability hinder their life.”

“Of course.”

“You know, I adapted myself to whatever they were good at. If they were good at cross country, and they were running, you figure out where is the best spot to watch them. I’m not rushing across the, you know.”

“Totally.”

“You know, I’m sticking over here, with the old ladies, and we are gonna chat until my kids runs by.”

“And how did you find with, connecting with other mums and other parents. I guess, yeah, how was that?”

“I’m typically very, I’m very outgoing, friendly, chat with people. You know I sit with people. Cause of course being disabled, no one wants to sit with you right? So I will sit with the person no one wants to sit with. I found myself when I was younger not wanting to sit with that person, the person who might have been considered ugly. Because you didn’t want to have any fingers pointed at you, right? Then I felt, you know what, like, I don’t want to be around people who make me feel that way. That I don’t want to sit with someone, who might be a wonderful person, but may not fit the stereotypical loveliness. So I try not to do that. I try to find the person. Cause you know, that could be me again some day, that someone doesn’t want to sit next to. Like I try to include the guy in the wheelchair instead of excluding them. They may not speak clearly, but you just listen. You know sometimes people have to listen, and stop being selfish.”

“And you know you and I met on an online group for FIbular Hemimelia. And I was the same, I have not met or even conceived in my mind they were other people like me.”

“I feel like all of the people in that group who have interacted are like, they know my heart song.”

“Yeah.”

“And when they things, I’m like, yes! Where have you been all my life?”

“Exactly!”

“Where have you been all my life? Can we all hug? Can we?”

“Yeah”

“Can we just go to a handicap accessible building, get our nails done and sit at a pool with our feet out?”

“Yes, that is what we are going to do once COVID settles.“

“I want to get a pedicure. “

“Yes, we’ll get a pedicure together.”

“I’ve never gotten a pedicure, because I am ashamed of how my feet look, and how. I don’t wanna deal with how they are going to perceive”

“You know, I’ve struggled with that, wanting to get even my hair waxed and things like that. As a teenager and as a young adult. I just felt like I could not go to anyone to do it, because I felt way too ashamed , because of judgment. And actually once, and i’ll tell you this story because you would understand, um, and maybe our listeners might understand once they hear it now. Laughs. Um, I went to a beautician once. I think she was a masseuse/ beautician, and I got this voucher from someone to go to her. And she gave me like a massage, and I had obviously taken my pants off for it, something that you feel so self-conscious of as it is as a teenagre. And then she saw my legs and I waxed my left leg, but I didn’t wax my right leg because the skin was so, is still, so incredibly sensitive there and it’s really painful to even touch it, after about 19 operations, something like that. And she laughed. She laughed at my hair. And she said why don’t you um, you know you need to shave this leg too or something like that. And she laughed at me. So, those kinds of things happen, and I think people need to understand that we are not scared for nothing.”

“And you don’t forget that”

“Yeah you don’t forget that.”

“Like that is not that you just shake off and keep going”

“No, exactly.”

“You think about it all the time. Like on a Tuesday at like one in the afternoon, you’re like I really wish that person wouldn’t have done that”

“The long lasting impact.”

“It does, it’s very long-lasting. Like, I’m a cranky adult now cause I feel that I’m just like, I might be more sympathetic towards people if people would be more sympathetic towards me.”

“Absolutely” 

“Cause I don’t’ have sympathy, when people are like oh, my ankle, my feet hurt. I’m like laughs. Your feet hurt, that’s adorable. Is it? Liel laughs. Really? How do they hurt? Let’s chat about that, cause when I walk for a long time, like at an amusement park when i was younger, boy for two days I would be like hubbled around. And I am not going to go, when I was younger, I wasn’t going to not go to the amusement park, I was going to the amusement park. I was going to be a typical person. I find that my mental health is cranky. I find that you know, the accessibility isn’t done gratefully. Like they’re not happy  to make, like places are not happy to invite the disabeld. Like there’s a ramp, so what more do they want? You know I still feel unwanted. Like, well I guess you don’t want my money, and I spend a lot.” Liel laughs. 

“That is such an important point, and I think businesses fail to realise that we are a spending potential for them that they are missing out on.”

“Yeah, if I don’t feel very welcomed, I’m probably not going to buy something there.”

“And on the contrary, I know that if there’s a place that I do feel welcome, I would spend money there, again and again. And I would spend more.”

“Every day.”

“Every day, exactly! So, for any businesses out there, be welcoming, it’s worth your money, and not just with a ramp.”

“They don’t know who’s disabled. They wouldn’t know just looking at you. I find that nothing has really changed.”

“In the attitudes?”

“Nothing has changed to me. Like people will say that they do to the point where OK, fine, you’re accepting. Jees, like make me feel bad about it, but you’re not.”

“Yeah.”

“Cause you wouldn’t be making an issue of it. Like you don’t bring up somebody’s disability in a conversation unless you’re like, unless it’s a friend of yours, and they’re like I have stairs, do you want me to turn on the light and, something appropriate.”

“Yes.”

“Don’t point out, that oh look I have a ramp for you to use. Well, I see that.”

“That’s the thing as well, like they are seeking”

“Our approval.”

“Approval, and like brownie points, like they’re seeking like a well done, as if they’ve gone above and beyond, when actually forgetting that accessibility is everyone’s human right. It’s not a privilege that some people should get. It’s a human right. Everyone deserves to have access to all the services and facilities that everybody else has.”

“In America, I expect to be able to access every building. If I go to Italy, well then I can’t except it, because I’m not a taxpayer there. And, I’ve been to Italy, and they’re relay not, because they have a lot of old building and they’re not happy to mar them with a ramp.”

“That’s what I’ve been told about the town that I was in yesterday that I told you about. They’ve commented on my post on Instagram and said the heritage overlay, which is the rules about the old building, prevents them from changing the building. Giggles. And I’m like, that’s not a good enough excuse”

“It’s not a good enough excuse. Also there are portable ramps.”

“Exactly.”

“Everybody should have the similar. They wouldn’t like it if they couldn’t access something. “

“And that’s the thing about disability, and I think people forget. Anyone can join us disabled at any moment. “

“At any point, a car accident, a fall. We include everybody in our ranks, even though you don’t wanna be. “

“yeah”

“No one wants to join us”

Giggles “Exactly.”

“And as you say, like acceptance in little and big businesses and services as well. Maybe we can get a sponsor for nailpolish, and I’ll do a pedicure and put it up on my Instagram”

“Do it together.”

“Do it together, and let everyone know that feet don’t all look the same, and not everyone has five toes, and not everyone’s toes are the same, and not everyone has ankles that move, and all of those things. Both laugh. Or ankles, I don’t even know if I can call mine an ankle, a little bump.”

“Exactly. What we have is like a bump.” both laugh. 

“On that note Julie, and it might be putting you a little bit on the spot, so no pressure. What does intersectionality mean to you?”

“It’s not a positive thing, being intersectionality, if say you are a beautiful tall blonde, and you are rich, and you are intelligent. That’s a positive intersectionality. I think terms like intersectionality are used when people are marginalised. You find words to describe your different um life views by saying, well, I’m this way because I grew up this, this, and this. They’re not that way because they didn’t have to grow up this this and this. But I’ve had all of these barriers. Intersectionality is barriers to succeeding, rather than positive to succeeding. You know, where I fit in on the sides of the intersection. I am still on my intersection. And I’m trying to cross over, but I will never be, you know, able-bodied. And the older I get, the less able-bodied I’m ever going to pretend to be.”

“Exactly, well said. I love the way that you explained that, and I almost see it as layers of barriers.”

“It is.”

“Julie, it’s been such a pleasure to chat today. Thank you so much for coming to (Un)marginalised.”

“I hope that it was what you were looking for. Like I feel like you already know all of the secrets.”

Laughs. “Yep.”

“I feel like if we wrote a book it would be Shhh. Liel laughs. That would be the title.”

“We are changing that now. So we are talking about it, and I’m so grateful that you agreed to come to the podcast. I hope that it was, that you enjoyed our chat together.”

“Yes, we should do it more often. Maybe this is our therapy.”

“I like to respectfully acknowledge the traditional owners of the land on which I’m recording the podcast, the Warranjri people of the Kulin Nation, and pay my respect to their elders past, present and emerging. As we tell our stories, I want to highlight that traditional owners of this land have been storytellers for generations.

Did you know there’s only one more episode for the first season of (Un)marginalised? If you’d like a bonus episode, and a second season, go to my Patreon account now, on www.patreon.com/LielKBridgford or click the link in the show notes. Also, don’t forget to rate, review, share and subscribe to the podcast. Until next time.”