This week Peta chats to Jarrod Sandell Hay. They discuss his time at a special school, shedding light on educational gaps and the hard work has has undertaken since to catch up.
Connect with Jarrod Sandell Hay
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Website: www.icantstandpodcast.com
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Peta [00:00:02] Hello and welcome to The I Can't Stand Podcast, the podcast answering your questions about what life is like when you have a disability. My name is Peta. I'm your host and I have cerebral palsy. This week I have Jarrod Sandell Hay. Hi. I absolutely love this conversation, if I'm being frank. Jared really was so open with me and so generous with his time. I think you're going to really enjoy it. We touched on the NDIS, what it was like to go through a special school, through his education and how other people perceive his relationship with him and his wife. As you can hear, there's a lot to talk about and it's very interesting. So without any further ado, let's get into it.
Jarrod [00:01:04] Hi Peta. My name is Jarrod Sandell-Hay. I am a disability advocate.
Peta [00:01:09] It's a pleasure to have you here today, Jarrod. Talk to me about the NDIS. First and foremost, why are you passionate about the scheme?
Jarrod [00:01:19] The NDIS has worked well for people with disabilities. But there's also worked well for a lot of big providers that have been slow to change their ways. And under the new proposals There is a bit of fear that we might be going back to the old days. So I'm really passionate about, highlighting why those big bad old days should be left behind us. I Don't know Peta about you but when I go to the local shopping centre. I do really annoyed when I see a person in a wheelchair sitting next to the support worker, and the support worker is not talking to them, and their not talking to their support worker. Up until recently, I was a peer worker. I used to go into group homes. I used to go in and try to connect people with their communities. That was my job. It was very clear that the disabled people living in these homes were seen as passive, so people would often do things to the people with disabilities, not with the people with disabilities. It was very medical language that was used and privacy. And, dignity was an afterthought. If it was ever a thought at all. I think there's a misconception that those places don't exist anymore. Or they are not the way they used to be. So that's okay. But when we have such low expectations of people with disabilities, where generally society are happy to see us having a coffee with our support worker once a week. How are we ever supposed to raise the expectations of disabled people?
Peta [00:04:10] Yeah, I. That's where I really commend you in your work, because I don't think I could do that. I would find that very triggering, that sort of work to to see people being so not, well, sometimes disrespected, I'm sure, but also just not seen as an individual. I, like I commend you for doing that. What led you to become a disability advocate? Was there something that really made your mind up that yes, I need to speak out and do this as my career?
Jarrod [00:04:49] I didn't have the family dynamic that you talk about on social media. In my family, Growing up was growing up disabled was very difficult for me. And I spent many years in my bedroom watching TV. 15 year old Jarrod sitting in his room. Not knowing anybody that looks like me. Not talking about the things I wanted to talk about. I turned on the TV. And there was this young girl, and then this fairly young man on TV, and they both had disabilities. And their names were Stella Young and George Taleporos . There a half an hour show, once a week and that half an hour I felt Connected to the people that identified with. And when we talk about safety, these are the people. And this is the community. They keep me safe and are important to me. I would much rather see a world where we can encourage everybody to be themselves and support them to have life they want, including culture and language and the accessibility needs.
Peta [00:06:42] I was so hesitant to become a part of the disability community when I was younger, and I regret not becoming a part of the community early on, because it's been so powerful for me to understand what disabled culture is, and to be fully supported by people who truly understand how bloody hard it is some days. I'm fascinated to sort of dive a little bit deeper into your background, Jarrod. I mean, from your, what you've just said. I, I'm assuming that you really experienced loneliness, isolation when you were younger. And I, from what you've told me. You also went to a special school for your education. So can you talk to me a little bit about that? Because you are the first person on the podcast that I've spoken to, and I've done over 150 episodes that went to a special school.
Jarrod [00:07:45] I had the best time at special school. I was around people that I could relate to. I do. I didn't really want to do any academic work And lucky for me, special schools weren't very academic. I was one of the very few. Verbal people at my special school. And I got on with the teachers really well. And the teachers, I think the teachers, it sounds really ablest, but the teachers enjoyed the conversation that they could have with me. One, because they didn't try to have conversation with the people who weren't able to communicate. And two because, I was quite mature for my age as well. It was easy for my mum and dad to just put me on the bus at 7 a.m. in the morning and then the bus, brought me back at 4 p.m.. The day after I left special school Peta, was the day my will got turned upside down. I said to my mum and dad, I said there is no way I am going to a day service. And the day after I left school, I really was like, whoa! I am so far behind society in my education. What am I supposed to do here? I set the bar really low. I, you know, I was there I was the 21 year old so I was like. Oh well I'll just live every day as it comes. We go out drinking and hanging around and spending all my money, on people and myself, in, pretty much dangerous situations. I had to go back and really get the academic education that I didn't get at all from special school. Special schools are advertised. In the late 80s early 90s as the one stop shop. So a special school will offer you an OT, physiotherapy. All your support workers during the day. So it would be somewhere where parents felt that the disabled child would be looked after and cared for.
Peta [00:11:17] How old were you when you finished school? 18.
Jarrod [00:11:20] Yeah, it was 18. So I went to special school from the age of 5 to the age of 18
Peta [00:11:28] And do you have any siblings? Jarrod.
Jarrod [00:11:31] I have a brother. And he went to a mainstream school. And what's even more ridiculous is that my parents were both teachers and in mainstream school. But it was never thought of that. There would be a way that I would be able to attend a mainstream school.Later on in life. They caused a lot of, conflict in my family as to why they made the decisions they made. It's always a good idea at the time people think. But the work they've had to do afterwards. It's been really hard.
Peta [00:12:28] And was there any guidance whatsoever as far as transition from like, life after school?
Jarrod [00:12:35] No, so. My peers at special school would go straight into a day service, and that was seen as a as a win for them, which I felt really. Yeah. With all of these experiences, just give me the fire in my belly to do better. I'm a very big music lover, and I'm a couple of us were to become DJs. So we were like oh well We'll just be bedroom Dj for ten years. It was pretty good Dj I played in a few clubs in Melbourne. It wasn't something they paid the bills. Not, the advocacy does. Naturally going into music, you need to build IT skills. So I enrolled myself in the very. Low level computer course where I pretty much knew everything about computers. But I didn't know how to read, write or any of that stuff so doing my computer courses. I really taught myself the basics of how to put a sentence together and things like that.
Peta [00:14:16] Remarkable. Jarrod. Really, I mean, good. I mean, it's such a big thing. I can't even imagine where you had to start to have to sort of squash in how many years of education that you had to, to be able to get to a level where you could get a mainstream job. Like, it's a real testament to you. It must've been a very long journey.
Jarrod [00:14:41] I have to give really big props to my manager of my first job, George. The George that I used to watch TV. Became my first boss. Poor George. He gave me his social media job and my spelling was absolutely atrocious. And for the first six months, he paid me to literally sit next to him and just watch him type and put words together. So big props to him. And. Yeah. Back in the day, when predictive text wasn't the thing. I was very exposed to how much I didn't know.
Peta [00:15:48] And how do you feel about special schools today? Do you feel they have a place in society, or do you think they need complete reform? Or do you believe they need to be eradicated?
Jarrod [00:16:00] I understand why they exist in a world where we segregate people with disabilities from the moment they are born. When you have segregated homes. And you have segregated workplaces and you have segregated special schools. They all exist because we have decided as a society that we are going to treat people with disabilities differently. Because we don't. We didn't want to see them. We don't want to fund the needs or. We are worried that if we support people, we will support kids with disabilities, then my kid would miss out on something. Mums, mums and dads of kids with disabilities are often misled into what is a good life for their disabled kid and very passionate parents who fight their local government and state government to build special schools because they have been told that this is the best option for your kid. It is good to see that people like myself who like you, probably know the people who go to special schools anymore. But the injustice is that the people who are in special schools do not deserve to be there. And then because as a society, we have decided that they are too hard to look after and they are too undeserving of the human rights. To be able to access, mainstream, accessible education.
Peta [00:18:49] To totally shift gears. I don't normally , talk to my guests about their partners, but, you specifically are happy for me to talk about it. And you're a big advocate about disability and, you know, having good representation of what a disabled relationship can be. So talk to me about how you felt about relationships when you were younger and how your wife, Chelsea, has changed, possibly that perspective.
Jarrod [00:19:22] Right. It's going to be fun. This is going to be the most controversial part of the podcast. [laughs] I feel safe when I'm in relationships with. Other disabled people. I am a bisexual man and. Coming out as Bi was easier then coming out as disabled in in society. The reason why I prefer being in disabled relationships is at the end of the night when you're going to bed together. If you both have a disability, there is this comfort of you both knowing what it took for you to be in that moment. Being married to a disabled woman has opened my eyes immensely to, I already knew. You know, the numbers and statistics of what life is like to be a disabled woman. But you actually see with my own eyes. When I was in my 20s, I used to hang out with the boys. They would love to talk about how, you know, the ultimate goal would be to be in relationship with an able bodied woman. I just felt weird about that. Why are we aiming for that? to be the standard. You can't help who you fall in love with or who you attracted to. But why are we making it a standard of. The goal is to be in a relationship with the most able-bodied person you can find? You're missing out.
Peta [00:21:50] Do you still have to find that you have to legitimise your relationship, that people do they consider your relationship on the same level as an able bodied couple?
Jarrod [00:22:01] No, of course not. Sam will say how long have you lived with your sister for? And then and then some people will say how long have you been with your girlfriend? I'm like no she's my wife and they say she's your Wife? What! A really good example of this Peta is our well-meaning families would say, you know, I got a couple of kids or whatever, and then they will talk about us and they'll be like, oh, well, the dogs are your kids. We are never expected to, babysit or, have babies ourselves. And that does not mean that my wife and I, don't deserve these expectations. Of having a baby or not any baby.
Peta [00:23:20] Thank you for listening to this week's episode. I hope you enjoyed it. If you did, can you please share the show with a friend? Check me out on social media. I absolutely love reading your messages. It always helps me push through and proceed on with the pod. So just a guest if you think you have an amazing guest for the pod. I'm also always interested to hear your perspective and write and review. If you listen on Apple or Spotify, it'll helps more people find the podcast. Thanks again. And until next week, have a good one guys. Bye! I would like to respectfully acknowledge the Wurundjeri people and Bunurong people of the Kulin Nation. Of which I record the podcast today. And I pay my respects to both elders, past and present, along with and especially to those in the First Nations communities who are disabled themselves.
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