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  • Writer's picturePeta

Tully Zygier The challenge of managing our own expectations

Peta and Tully have a great chat this week. It is one of the most honest and frank conversations ever on the podcast.

How does the low expectations of society and the high expectations of our parents shaped us as disabled women?

You can ask Peta a question for a future episode of the podcast via:

Instagram @petahooke


Episode Transcript:

Peta [00:00:03] Hello and welcome to the I Can't Stand 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. This week I have Tully Zygier on the podcast. It's a very frank and honest discussion, and I really hope you enjoy it. It's not one for little ease, though, so if they are around, maybe wait until you can listen to it privately. Okay. Without any further ado, let's hand over to Tully.

Tully [00:00:54] Hi, I'm Tully, and I have a chronic illness called Familial Dysautonomia. A very rare condition for people from European Jewish backgrounds, and it's a neurological degenerative condition. So it affects me in different ways. Mostly my walking. So I use a walking train and I use a scooter when I need to. I kind of envy those people who were born with a disability because. They kind of used to it, you know it, they're born with that, I know I know a different.

Peta [00:01:36] As Lady Gaga would say, I was born this way.

Tully [00:01:39] Yeah, and it may be hard sometimes, but I feel like when you have a degenerative condition, you start off kind of healthy and capable, but it kind of slow down you. So you know what you're missing out on because you're experience dependent stuff before. If that makes any sense.

Peta [00:02:04] Oh, completely, and I think that's one of the reasons why I wanted to get you on this podcast because you are one of the most resilient people that I know.

Tully [00:02:14] I think because. I grew up in an able-bodied society and I was able bodied. For quite a while. I think I have a bit of able bodied ideas and make some assumptions about people with disabilities that an able bodied person would make that. A person who was born with a disability would probably. Not agree with me.

Peta [00:02:51] I mean, and I relate to that. You know, I think I still struggle with ableism. You know, I I think it probably stems from the fact that many people with disabilities are brought up by people without disabilities. So I think it's not unusual to have inherent ableism in us and in how we perceive the world because that's who we've been taught by.

Tully [00:03:21] Listen, my parents, particularly my mom, she just expected me to go to mainstream school and go to university. And I think if I hadn't have done that, I wouldn't be who I am today. I think if I'd been sent to a special school, the expectations would've been lower of me. And I don't think I would have thrived as much as. I have. I'm grateful to my parents for pushing me. But sometimes I think if it had been if they'd been a bit easier on me. My expectations of myself wouldn't be so high because they are high. I push myself. Too much sometimes. I'm destined. To fail or screw up because there's only so much I can actually do. Living in a body that's limited, you know, so. How do you find the balance? I just it's. Yeah, it's a hard one.

Peta [00:04:40] Yes. Like, sometimes like you, I push myself too far, I'm exhausted, and I think God like how might of a gun be able to balance, particularly like looking further for me personally, like how how am I going to have children? And that's just an expectation on myself that I know I hopefully would want children on one day. But you also think, how do you also manage having a disability at the same time?

Tully [00:05:13] I never really allowed myself. To think about having kids. Because I always thought. It would be too difficult. Listen, I just got a dog and for 30 frigging years, I thought I could never get a dog because that would be too much. To me.

Peta [00:05:40] I'll never forget Tully, and I've only known each other nine months, something like that, and don't ever forget that this the day she jumped on Zoom for our group meeting and she's like, I just have to tell everyone my amazing news and we're thinking, Oh my god, look, she's going to be. She said, with all the joy in the world, she said, I'm getting a dog. Many of the other women on the cold were like, Really? It's like you big news. But I understand why that's such a big, big thing.

Tully [00:06:14] It's massive, you know, like. It's so hot I can't walk my dog yet, I have to learn how to walk my dog with my scooter. I it's hard for me to feed him, I can't pick up his coat. I have to find ways of doing it. This is so many things, barriers. That I have to get through to have a dog.

Peta [00:06:38] Why? Why was having a dog so important to you?

Tully [00:06:44] So many people doubted so many people, my parents, I actually was talking to my mom an hour ago saying, Do you remember like a year ago, we went for a walk with my uncle and aunt and I was on the scooter and we're looking at dogs and they were all, you all said, Oh, you can't get a dog, it's too hard. How would you manage, you know? You know, it's not possible. Because of that doubt. I wasn't even more determined to get a dog. And I did it, I fricking did it, and. He makes me so happy, I just look at him and he looks at me and he licks my face. And he play through this pause in this way. And it's my dog, it's my baby. And I'm just. I never thought it would be possible.

Peta [00:07:42] What do you love about having a disability?

Peta [00:07:46] If I didn't have a disability, I wouldn't be who I am. So, you know, I'm pretty, I'm going to say now I'm pretty fucking awesome. I think it's given me empathy. Give me understanding it's helped me be more patient. Accepting. I don't know. I think that's what I like about being disabled. I don't like the question, really.

Peta [00:08:12] That's OK.

Tully [00:08:13] I have a love hate relationship with being disabled.

Peta [00:08:17] You can be both like my next question was What do you hate about having a disability? You don't have to go there if you don't want to.

Tully [00:08:26] I got new job with Alfread Health. Which is pretty awesome. So I was working in the office one day a week, and I had to use my scooter to get around because the toilet was way too far from this and I couldn't even open the toilet door because it was a heavy toll that I had to push open. So. I actually had to ask people. Tell me, go to the bathroom and I hate it, I hate having to ask for help. It's so important to me to be independent. So that was really frustrating. Two nights ago, three am. Dead asleep. Wake up, suddenly, the fire alarms going off in the building. Oh, now I'm on the fifth floor. I'm going to hear a fire truck go outside. I couldn't just jump out of bed and run downstairs. I do wait for someone to come and help me. I'm just tired of having to tease other people. I hate that I just wanted to be able to do everything myself and my mom and other people have told me I need to just get over it and accept help.

Peta [00:09:42] It's all very easy to say when you're not the one having to always ask for help. I mean, I get it, I've been stuck in many a hotel building when the fire alarm goes off, it only happened to me this year. And regardless of the fact that both my parents ran into my room and sat with me to wait to see what was going to happen, it's still scary because you completely out of control.

Tully [00:10:09] Yeah. So that's what I hate about being disabled.

Peta [00:10:13] But you know what, a lot of the things that make having a disability hard isn't actually because of the disability. Like if that door on the toilet wasn't heavy.

Tully [00:10:29] For those listening, there is funding available for Job Access through Commonwealth funding. So for people with disabilities working, they can use this funding to help make their job accessible. So that's really handy.

Peta [00:10:45] Exactly, and I think that's one of the biggest misconceptions about employment is people think that having people with a disability is going to be expensive to the company, whereas in reality there's a lot of support there that has no financial implications to the company at all.

Tully [00:11:04] So then how do we make this information more accessible? Well, more, you know, how do we? Inform more people about this?

Peta [00:11:14] We have to go mainstream. When I first went to start the podcast, a lot of people in my life said, I'm sure many people with a disability will love it. And I said, Well, to be honest, it's not really for people with disabilities if they consume it and they love it, great. But it's for people who don't have somebody with a disability in their life so they can gain some understanding. If you had a magic wand and you could change one thing about what society thought of people with disabilities or one area that really challenges people with disabilities, what would it be?

Tully [00:12:01] That we're not capable of sex to be sexual beings that we, we're just seen is asexual that why would we have an interest in? Sex. I have an issue, particularly around the parents who don't see the children as grown ups and don't allow their grown up children to express themselves sexually.

Peta [00:12:31] Well, there's funding you can get funding in your NDIS package for it, which is great.

Tully [00:12:36] But you have to ask for it. So if you've got your parent in that room, in the NDIS planning room, Is your parent really going to really ask for that on your behalf.

Peta [00:12:48] Or are you going to be embarrassed to ask in front of your mum or dad? It's an interesting area that I only have to go on a dating app for like two days and then I'll get really, really, really disgusting like fetishised messages. Like, it's very odd. But people's perception from my experience is either they consider me to be asexual, to have no desire at all or I'm something to tick off their list.

Tully [00:13:22] It's horrible. It's funny, like. I never thought I was sexually desirable growing up because I always thought that. Always different to my peers, to girls in high school, and why would a guy ever want to be with a girl who? You know. Walked really smelt, I had issues with sweat due to my condition, so smelly. Yeah, I just thought. No one's ever going to be interested in me. So maybe it's not. Listen, maybe it's not mainstream society, maybe it's also us as well. I don't know.

Peta [00:14:09] Well, it's also what we're taught to think, you know, what's wrong with walking differently? Why is that seen as unattractive? That's got nothing to do with being attractive, being the person that you are. You have worked with so many different people with different disabilities. What advice would you give a young person with a disability, regardless of whether it's degenerative or whether they were born with it? What would you say sitting them down and say This is what you need to do? To live a fulfilling life.

Tully [00:14:52] Don't listen to the negative people. Don't listen to the doubters. And when the dad is to speak to you, stand up for yourself and do it anyway. What drives me is proving people wrong. And I think that's what I would tell young people with disabilities. And that's partly why I wrote my book with the draught because. I've met quite a few parents of kids with disabilities who doubt they keep their kids ability and don't expect much of them. Don't expect that they'd. You know, the work or drive or fly or have a, you know, have a partner. And I wanted to show these parents that, you know, it is possible just. In a different way, we just have to do it in a different way. I think they're scared and they pretend to be protective of their kids, and they worry. They don't want their kids to get hurt. But you know what? You've got to get hurt. And we're going to get hurt anyway. That's part of what?

Peta [00:16:08] So lastly. What do you hope will be the future for people with disabilities in Australia?

Tully [00:16:16] I want people with disabilities to be treated equally, not have to fight. But what they need. But I don't know if that's going to change anytime soon.

Peta [00:16:30] I'm going to be hopeful and say it is because with people like us who now have the ability to talk on a podcast and be as frank and as real as we have been this afternoon. I don't see how it can't.

Peta [00:16:51] Thank you for listening to this week's podcast, and thank you Tully for joining me as a guest on the podcast. I hope you all enjoyed it. I certainly did. If you have a question that you think I should answer on a future podcast, there are three ways you can send me a question. One by D.M. on my Instagram. My handle is @petahooke. Two by email, or three by my website If you did enjoy the episode, can I encourage you to write and review the podcast if you listen on Apple Podcasts? Even just by filling in the stars, it all helps more people find the podcasts. OK, guys. Until next week. Bye.


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