Episode 6- Through My Eyes

Speaker 1:          Welcome to Loop Me In, the podcast community for parents and carers on raising children with disabilities. Join presenters, Dr. Lisa Interligi and Kristine Christopoulos and their guests on sharing experiences, information and support ideas to help children with disabilities flourish. Loop Me In is brought to you weekly on platforms like Apple Podcasts, Spotify and Stitcher, to name a few. You can learn more connect with the Loop Me In community and listen to more episodes on our website loop-me-in.com.au.

Speaker 2:          Welcome, Ally, to our podcast.

Ally:                    Thank you.

Speaker 2:          Now, Ally. Tell us a little bit about yourself.

Ally:                    I am a 32-year-old young woman, with a mild intellectual disability. It’s called auditory-visual processing disorder. And I was diagnosed at the age of four and a half and I got it from, we think, from meningitis.

Speaker 2:          Okay.

Speaker 4:          Oh, goodness. So that meningitis, that’s pretty severe, isn’t it? I guess you were in hospital for that?

Ally:                    Yeah. I was in hospital for about 10 days.

Speaker 4:          Wow!

Ally:                    Wow!

Speaker 4:          Well and good. And, tell us a bit about the community that you grew up in.

Ally:                    I grew up in the Jewish community of Caufield, East St Kilda, South Caufield. But, I was originally living in Pahran, up to the age of five and then I moved to East St Kilda. Yeah. I went to kindergarten. No, I went to creche at the Lancaster House in Stonnington, which was a typical creche. Yeah. And then I went to kindergarten at Mount Scopus College at the age of three. And I was there until grade six.

Speaker 4:          Okay.

Ally:                    And then I … Yeah.

Speaker 2:          And Ally, what was it like to go to school at Mount Scopus?

Ally:                    It was quite interesting. It was very different. Because I was so young, I didn’t really understand much of what was going on. I mean, I thought I was just friends with … People would just like be friends with me, because they were friends with me. I didn’t really know anything until I was about 12 about having a disability of anything. I mean, I did struggle with a lot. I was learning things at different levels to the other children. My mom got told that I was developing different to my peers in class, at four and a half. So just before I went to school.

So I got tested for that. And, it was pretty like a normal upbringing, close family, friends, going away on holidays with my brother and stuff, camping, all of that. And I just saw things as it was at that time. I mean, nothing really came to me until about secondary school.

Speaker 4:          What happened then?

Ally:                    So my mom, I think at the age of, I would say, 12 or 13 said to me, “Oh, your development is a little bit different to your peers.” At that stage, I wasn’t mature enough to understand what the disability was. So I couldn’t really point it. And then, when I started to see how much difference it was being taken out of class from maths and english and all of that. And then I realized that I wasn’t developing the same as the other children, so I felt a little bit different, because I also had integration aids at that time.

Speaker 2:          And, what was that like Ally, in respect to friends around you being moved out of the class? How did that make you feel?

Ally:                    It was a bit strange, because I wanted to be like everybody else.

Speaker 4:          Hmm.

Ally:                    And like with everybody else, rather than being taken out of class.

Speaker 2:          Yeah. And I would imagine that would’ve been a challenge. What were the benefits of going through the mainstream system, though?

Ally:                    The benefits of going through the mainstream system is that you was able to push yourself a lot more and watch how other people did things. And often I would learn and from them. Even though it took me slightly longer, but I would still learn from them. And a lot of the people in the group of the particular group that I had were actually quite nice to me and just had the normal friendship with me, even though I struggle to communicate and to … So, usually I would just sit in the group and listen. I wouldn’t really talk very much.

Speaker 2:          And-

Speaker 4:          And what was some of the things that you found frustrating during that period, Ally? What were some of the things that you wish were different?

Ally:                    Not being able to read at the same level and do subjects at the same level as everybody else. Not being able to socialize at the same level as the others and have the same interest as the other kids in my year. Not always being invited out was also very difficult. Like, yes, people were my friends, but they didn’t always have me over or go out with me. It was more just them at school with me, really.

Speaker 4:          And so, if you had an opportunity now to change things, wave a magic wand and change that experience, how would you want to change it? What would you tell your friends to do differently?

Ally:                    To have me over at more and to socialize with me, even though it was difficult for me to socialize, basically. Because even now, it’s still hard to have friends and to be with other people and stuff.

Speaker 2:          And what would you say to teachers now, Ally? What was it like with your teachers and your carers at school?

Ally:                    It was quite different. I mean, they would obviously not understand that it took … Like, some things took longer for me and stuff. And, it was hard to be doing easier work and stuff and to … Basically, even just the simple thing of sport was difficult for me. I was always not being picked for sport teams and stuff, because I was slower. It’s always very competitive being in that environment and stuff, so sometimes I would say to teachers now, to just let every person with their own disability be part of the team and not be rejective-

Speaker 4:          Mm.

Ally:                    … to them.

Speaker 4:          Be more inclusive to everybody. Yeah. I agree with you there. And what about the aids that you had coming in? What did they usually do for you when they did take you out of those classes?

Ally:                    They helped me with maths and english and sos and science and that kind of thing. Those were the subjects that I was taken out of the most, was those subjects. And then I didn’t really have the aid much in, basically, art and PE and sport and all of those subjects. I just did it with the group. And, sometimes the teacher would buddy me up with another kid or something.

Speaker 2:          Yeah. And did you grow up with many carers, Ally?

Ally:                    Not really. Both my parents took a lot of responsibility of me when I was younger. So, they were basically my full-time carers at the time. And, occasionally, when they went out, I had babysitters and stuff. And basically, I didn’t really have a support worker or a carer.

Speaker 2:          And what about now, Ally? Do you use any support workers now?

Ally:                    Yeah. I do. I use support workers once a week or twice a week, maybe. I have a support worker where now that I’m living with another girl at an apartment.

Speaker 2:          Oh, wow! So you’ve moved out of home.

Ally:                    Yeah. Yeah. I’ve moved out of home and stuff, which is quite interesting for me. It’s a bit of a challenge at the moment, because I’m so used to living at home, but …

Speaker 2:          You have to do all the cleaning up now, don’t you?

Ally:                    Yeah, I do. But I get a bit of help with the cooking and stuff. And, basically, I do my own laundry now, which is good.

Speaker 2:          That’s great.

Speaker 4:          That’s fantastic. And tell me. What we love about you Ally, is that you have this passion about being a voice for those people who may have additional needs like that, but can’t have that voice. And so, that’s something that is absolutely fantastic. As a young adult now, what would you like to see change for the community, for dealing with people with additional needs? What would you like to say to people about how we can better support people with additional needs?

Ally:                    Being able to give every young adult with a disability a job in whatever skill level they are at the time, and not to discriminate like, “Oh, we’ll choose this person [inaudible 00:12:10] with this person, because they don’t have a disability,” and stuff. I feel that it’s very hard for us to get jobs-

Speaker 2:          Yeah.

Ally:                    … at the moment. And, a lot of us, because it’s so hard, we have to go through a lot of disability organizations in order to do so. Like [inaudible 00:12:35].

Speaker 4:          And, do you have a job at the moment?

Ally:                    No.

Speaker 4:          And, what sort of job would you like to do, if you could get one?

Ally:                    I would like to work with babies.

Speaker 2:          Yeah.

Speaker 4:          Fantastic. I’m sure there’s a lot of people out there, although with COVID it’s a bit hard, isn’t it? But a lot of people out there-

Ally:                    … it’s harder.

Speaker 4:          Yeah. Would love that.

Speaker 2:          I think you’d be very good at it, Ally.

Ally:                    Thank you.

Speaker 2:          Can you see many changes now as an adult? Can you see many changes looking now at what the community’s like at the moment, with younger people with a disability? For example, there probably wasn’t a Flying Fox around back then, was there?

Ally:                    No. There was no camp programs or really anything like in the summer times. I had to go to mainstream holiday programs, basically. [inaudible 00:13:31] my childhood. Now they’ve at least … It’s amazing that Flying Foxes is for those kids and stuff, because we never had it. We never had the opportunity to go to camp and to earn stuff. I never had that opportunity, besides school camp, to go and be with the people, basically, and stuff.

Speaker 2:          Yeah. And even all the carers that are out there at the moment that, are more your age group and younger people. I can imagine that’s different to what it was like when you were growing up?

Ally:                    Yeah. Yeah. We didn’t really have so much of that. We had a lot of our parents doing the support and stuff. And in the holidays I would go to a mainstream holiday program, basically.

Speaker 4:          And do you think people are more inclusive and tolerant these days?

Ally:                    In some things they are. Not in everything, I would say. Obviously, it’s definitely improving in schools and stuff, but it’s not there yet. I don’t see completely where it should be. Like-

Speaker 2:          Tell us something that you would like to see in the future, Ally, that you’re not still not seeing now?

Ally:                    That people were not being judged, or asked what their disability is, if you know what I mean?

Speaker 2:          Yeah. I do. [inaudible 00:15:07]

Ally:                    Yeah. Or the saying of the lower and the high functioning disability, kind of thing. It defines you as a person or …

Speaker 2:          Mm.

Ally:                    [inaudible 00:15:19] … services you get, basically. Like, Basically, just like in the NDIS, even though NDIS has come out now, you’re still having to define, “I have this,” or, “I have that.”

Speaker 2:          Yeah-

Ally:                    In order to … Yeah.

Speaker 2:          … to get anywhere with it. Yeah. I understand what you’re saying. And that still hasn’t changed all these years later, has it?

Ally:                    No. No. And, I know for me as someone who has a disability, it doesn’t matter to me who has what disability really anymore. I just want to be with everyone.

Speaker 2:          Mm.

Ally:                    Basically, I don’t define, myself.

Speaker 2:          Yeah.

Ally:                    Because, yeah. I really just don’t define.

Speaker 2:          Yeah.

Speaker 4:          I think that’s such a great point, Ally. If we flip it, because I know so many people who wouldn’t be defined as somebody with a disability, but have such wide-ranging abilities. So, if we rather think about people have all different abilities, rather than labeling somebody as having a disability, that would be a much better way to view the world, wouldn’t it really?

Ally:                    Yeah. Because, I feel everybody’s unique in their own way. And I mean, I’ve met so many wonderful people due to that, particularly through Flying Fox. I didn’t realize how Flying Fox was such an amazing organization that I’ve made … I’ve met so many people through it and just like … And, I don’t care what levels they are, and from the highest to the lowest, doesn’t bother me. I would still be friends with anyone.

Speaker 2:          Yeah. And that’s what you want out of life, isn’t it? We all want that, anyway.

Ally:                    Yeah.

Speaker 4:          You’re such a lovely person.

Ally:                    Thank you.

Speaker 4:          And I really love that, the fact that you have taken on this challenge of being a voice, because it’s really important. I think everybody wants to have a voice in how they’re treated or how they grow up or how they conduct their lives. And sometimes that’s a bit more challenging for some people than others. And it’s great to have an advocate like you really putting forward your thoughts and experiences.

Ally:                    Thank you.

Speaker 2:          Well done to you, Ally.

Ally:                    Thank you very much.

Speaker 2:          Thank you for sharing your experience with us today. We really appreciate you coming on.

Ally:                    Thank you.

Speaker 4:          Bye Ally.

Ally:                    Bye.

Speaker 2:          Bye.

Speaker 1:          Thanks for being part of the Loop Me In community today and joining our conversation on raising children with disabilities. Join us for the next episode on some of your favorite platforms like Spotify and Apple Podcast. If you would like to support us, please recommend the Loop Me In podcast to your network of parents, carers and providers. If you would like us to cover a topic or invite a guest to chat, please email us at contact@loop-me-in.com.au or go to our website@loop-me-in.com.au. If you’ve got any feedback, please let us know so we can improve and cover issues you want. And, of course, if anything in the podcast today has raised concerns for you.

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