Alyce lives her life to the full because she always has. From being the only one with an obvious disability at school, to finding love and to being on the second person in the world with her type of disability to have children.
She has always defied expectations. But Alyce always wants you to know that while she is extraordinary she also equally ordinary.
Connect with Alyce:
Alyces' Facebook Page: https://www.facebook.com/AlyceNelligan.Greens
Alyces' Instagram: https://www.instagram.com/princessspeedy/
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode Transcript:
Peta [00:00:02] Hello and welcome to the I Can't Stand Podcast. The podcast, answering your questions on what life is like when you have a disability. My name is Peter. I'm your host. I have the flu and I also have cerebral palsy. Apologies for my voice. I guess the next couple of podcasts is just going to have to be known as the flu series. So I'm just going to lean into my sexy, husky voice and get on with it. So without any further ado, let's hand over to Alyce.
Alyce [00:00:46] I'm Alyce Nelligan. I'm a disability advocate, political activist and proud disabled woman. And I am so excited to be here with you, Peta, you don't even know.
Peta [00:00:57] Tell me a little bit about you. What makes you tick? You said you're a political activist. So is that a new thing in life or have you always been politically minded?
Alyce [00:01:09] Um, I think it's a nature of being disabled because we do have so many challenges in society. It kind of. I always joke like I didn't choose to be an advocate. That advocate left chose me. And so I've also always had to kind of fight against different institutions just to have equality. And so it's made me a very political person by nature.
Peta [00:01:34] Yeah. I'm from for researching this episode. I feel like you were thrust in the spotlight somewhat for political reasons, very early in life. Can you tell me what happened on your first day of primary school?
Alyce [00:01:48] I was enrolled in mainstream school by my parents and this school actually rejected my application and said, no, no, I she's in a wheelchair. She can go to the special school down the road, you know, and that doesn't set you up well in life, especially if you want to go on to academia or open your world up. And so my parents were like, no, you are going to take it. And what ensured was a battle between my parents and the school and the Department of Education, which was retracted, but my parents won. So in short, this kind of comedy of errors of all, my goodness, we have a child in a wheelchair now we have to make a school accessible. So I didn't actually get to go to school for like the first few months while they renovated the school. And yet there's a bit of a funny story about the first day. You've got the media there, you've got the principal there. You know, I had to cut this fancy red ribbon, you know, look how great this school is. Look how great they are. And we got inside the school and all of the rats had a step at the end.
Peta [00:03:07] That's ridiculous.
Alyce [00:03:08] Right now, I think my mother lost like. Some, I don't know, brain cells that die. She just had a stroke. My poor parents and I would just like, oh, my goodness, you have to redo all of this. And sorry, I didn't get to go to school for another couple of weeks.
Peta [00:03:25] It's hard enough to make new friends as it is, let alone you being singled out as this person having to have all these adaptions as both of us in wheelchairs. We live a life that requires adaptions, but you don't need to make a big song and dance about it. It's just should just be part of life. And I know this is, you know, a while ago now, but did you find it difficult to then make friends?
Alyce [00:03:54] Thankfully, not so much, but I think it was a very unique situation. It was a little country school, you know, it's a pretty friendly atmosphere. But I can easily say if you didn't have that kind of free environment, that it would absolutely ostracise you. Later on, I had to go to a different primary school where my parents moved, where students were kind of more segregated into a unit. And it was very difficult to make friends because when it's all about, you know, your disability and the exes and as you said, this big song and dance made about it, but it's not same as just normal and something that we need to do. It absolutely brings stigma. And so, yeah, it wasn't always easy for me. Being disabled is such an important part of my identity, and I don't want to terrorise those lovely people that say, Oh, but I don't see your disability. Well, you don't see this really important part of me. Something that does matter. But it's not all that we are. And I think we also don't want it to overshadow us as people. You know, we want to be valued and visible, you know, for all of the other fabulous things that we do and not just because we are disabled.
Peta [00:05:11] I now correct my friends when they say they don't see my disability. I say, Do you mean that you don't see any negatives in relation to my disability? And most of the time they go, Oh yes, that's what I mean. I really try to not be too sensitive to how particularly my friends and family react because I always try and picture it from their situation and see if there's a better way to phrase certain things.
Alyce [00:05:42] Absolutely. I mean, it's different, my friends and family, because we know that they love and accept us and they're just expressing their love and admiration for us and fun. And I'm with you. I don't marketplace my friendships or anything like that, but I think it is important that we just generally, as you said, kind of reframe it. We always see disability in these different ways and we don't want to be seen as anyone else. We want our disability acknowledge because if we're not acknowledging it, then we don't fix society to accommodate us.
Peta [00:06:15] And boy, oh, boy, do you make visibility? Very stylish relief for those who obviously this is an audio medium and you can't say Elise on the screen like I can, but you have a fabulous outfit on today if you want to describe it to the listeners.
Alyce [00:06:31] So thank you. I have a very bright floral dress in like red oranges and pinks, and I have my big glitter tassel earrings on in matching pink, orange and peach colours and some glitter bangles. For me, my fashion journey hasn't always been easy, and it's actually become such a crucial part of my identity as a disabled woman. You know, when I was younger, you didn't see models with disabilities, you didn't see actors with disabilities, you didn't see anybody, and you couldn't imagine what you could be. And for me, it was kind of like that utilitarian kind of practical dressing, you know, pants and tracksuits and comfort. And that's kind of what everybody says to you that you need to do. I'll never forget that I had it. Tell me you need to dress so it's easy for your care to dress you. This whole.
Peta [00:07:30] Old chestnut.
Alyce [00:07:31] Yeah, I know. I'm sure you've heard really similar things.
Peta [00:07:35] Yes.
Alyce [00:07:36] And it's kind of like you have to yourself that, you know, you feel like you can't be yourself or take up space or you don't get to express yourself. The other side of that is fashion isn't terribly accessible. You know, there wasn't Carole Taylor designs, you know, when we were younger. It was so hard to dress to fit my body. It wasn't really tall. Stella Young, the fabulous Stella Young burst out onto our screens so bright, so unapologetically gorgeous and disabled that I started to really think, You know what? Actually, I can experiment with fashion just by her being so visible. I started wearing different things and trying different styles and not particularly caring whether it fit my body or shade my scoliosis. People think that fashion is frivolous, but it's not. It's crucial to how we see ourselves and how the world sees us. And when I dress up like this and be so unashamedly happy in myself, it's actually challenging what people think we are and what type of clothes and what we're supposed to be. And I love that fashion is so disruptive. I wish I had a dollar. Actually, I wish we both had a dollar for every time a stranger has just pulled up and said, Oh my gosh, what happened to you? They instantly go to sympathy. They're instantly worried about you. Whereas if they see us with this fabulous outfit or this bright coloured or they like us shoes, the first thing I ask is about clothes. They will come up and say, Oh, I love your dress or I love those earrings, know? And it makes us, I don't know, say more human seeing more seeing more real. And they feel like they can relate to us.
Peta [00:09:31] And I really have to work on my judgement as far as judging a book by its cover, because when I look at you, you're such a glamorous, sparkly person. And when I found out you grew up on a farm, I did not expect that. So I told me that life on the farm was life on a farm accessible to you?
Alyce [00:09:49] I wouldn't say dreadfully accessible, but it is still amazing. My parents always found ways to include me, which I think is really, really important. So they were told that I would never do anything. So I'd never talk, I'd never roll over, I'd never sit up, I'd never do anything. And my parents just took me. I'm like, Bugger that, you know? They didn't take any notice of that, but they, they didn't have any expectations. So they weren't trying to get me to overcome my disability. But I also kind of like, let me have opportunities for success. If I wanted to crawl around in the dirt or, you know, I'd take my foot off my chair so I could get into the shipyards with my dad and I would pull myself around by myself. You know, people think, oh, you know, that quiet and dignified, but actually it's quite liberating. And so I would help Dan, you know, pick up the wool or I would like the illustrators or that the drench for the sheep. I would be cracking the whip and bringing the dogs up and actually helping. And so, yeah, there was a lot of things that I couldn't do, but there were lots of things that I could do, and I just did it, you know? And they are some of my most fond memories.
Peta [00:11:07] Not only do I admire you because you're being brave and taking not to say the wrong word, but the step out into politics and to really, you know, educate the community. But how do you go engaging with the community in such an important role that many people don't see? Disabled people do?
Alyce [00:11:28] It's so important that I do this because if I if I don't and if I don't, we don't get a seat at the table. And so, yeah, it's tough for me to put myself out there as a political candidate facing scrutiny of all you can't do the job or, you know, people not taking me seriously. My actually, I'm an incredibly accomplished woman, you know, and a proud of everything that I've done. But I know if I'm not out there, you know, doing that, that really important work of saying, this is what I need to, you know, this is what we need to be doing, you know, and I need to ensure that other people get the opportunities that we've had. You know, we've had supportive families. We've had a good education. We've had all these this privilege, all this leg up. We now have to bring our community with us. And yet it's tough to get up there in a room where, you know, I've gone to events where I have to speak. You know, it's like a forum for the politicians. And I can't access the state or I can't access the lectern and I can't, you know, do the things that other people are doing. And I just have to suck it up and stand up there and make sure my voice is heard as well. And it has been tough. It it isn't easy work.
Peta [00:12:46] You have many facets of your life. And while I really admire your professional life and going into politics and doing all the amazing things that you do, probably because I'm a single girl, I was looking at your relationship and going, Oh, I have so many questions and listeners, just so you know, I have made sure that it is okay for me to ask them. But I think you did one of the bravest things that you can possibly do. You went on a weekend away with a new partner, just the two of you. What was that like?
Alyce [00:13:26] Nerve wracking. It did take a lot of bravery. I think it's really important to note that like. We're kind of brought up to think that our disability is a bit and that it's really important to separate the relationship from your carer. Right. And so I am sorry, meaning my disabled friends say the exact same thing. You know, I don't want my partner looking after me. I don't want them to resent me. I don't want to I feel like I'm, you know, this this trouble for them. And so I've always been quite guarded as you are, like, I don't want my partner doing anything. You know, relationships have failed because of my wish. I'll be absolutely honest. God have said to me, I can't handle it. I don't like it. I'm out, you know? And there's only so many times that that can get said to you before your heart breaks. And I met Brendan, my partner's Brendan, and he was like, Let's go away to the golf course for the weekend. And I was like, Oh, this would mean that you'll have to help me. You know, I need any personal care. But he was like, It's fine, you know? And I thought it might be fun. And I was sorry. I was so nervous. I didn't really want to do it. But I thought, you know, what if I mean, I really liked him and I thought, if we're going to be serious, then I have to let him in. I have to let him see what my needs are and and to be black to see if he's okay with it. And off we went for the weekend. And he just looked after me fabulously and didn't seem to care at all. And I think that that actually made me go, Oh, it is okay.
Peta [00:15:09] Well, I'm not surprised when the two of you decided to have a baby.
Alyce [00:15:15] Yes, we did. I wouldn't say decide. The universe decided that we did. We did have a baby. And she is amazing.
Peta [00:15:26] You were the second in the world with your disability to have that right?
Alyce [00:15:31] Yes, I am the second. As terrifying as that sounds, it's great not to be the first. I know whether you like me. We're always the first person, which it's like, great to be a trailblazer, but it's exhausting and terrifying being the first person to actually relieve that. My girlfriend Fiona. Shout out to Fiona Anderson, my friend in the UK. She has two beautiful daughters and so she was the first. So at least the doctors had a bit of a blueprint they could follow.
Peta [00:16:02] But as usual, you're guiding the doctors to be like, this is the example. Rather than saying, I get no problem, we know how to do this. This is totally fraught.
Alyce [00:16:13] Yet we've always kind of be the one leading that conversation, you know, doing the research, knowing that disability, because they kind of throw their hands in the air and panic. Yeah, I had to really strongly advocate that this pregnancy could be successful, that it would be okay, that there were things that we could do, that I could have a safe this.
Peta [00:16:33] So I feel like we've already touched on this. But I want to ask the question to you directly. What do you love about having a disability?
Alyce [00:16:42] I do love having a disability, which I think is such a radical statement in and of itself. But I love that it's given me resilience and empathy, compassion, a sense of social justice. It's let me understand the world more. I feel like it's it's only added to my life, you know, and I, I might get frustrated at the things that I can't do because of society. But in the end, I still have a very beautiful life. My life is just as fabulous as anyone else's.
Peta [00:17:16] Oh, I would say almost more fabulous by what you're wearing today. But anyway. And is there anything you don't like about having a disability?
Alyce [00:17:25] There are parts of being disabled that are challenging, like fatigue or chronic health issues, trying to navigate the health system, the NDIS, you know, all of those things that add pressure and stress. I don't necessarily miss walking or debt single, you know, those kinds of things. It's more that I can't do those things because society is not structured to accommodate us. So it's not actually the fact that I have to sit in a chair, but it's the fact that architecture houses public spaces, you know, nature and things like that. I'm not accessible to me, and so I miss that. And that's only because of access, not because of my disability. And so we can't just get a coffee, we can't go shopping, we can't just go to the beach. Everything has to be accommodated. Everything has to be micromanaged. It is tough. It's hard to be proud in the context of frustration. You know, we can love that loss. We can love our disability. We can love our self and still be exhausted and still be frustrated and still wish to do things.
Peta [00:18:35] What do you wish people better understood about living with a disability?
Alyce [00:18:40] Oh, that is such a fantastic question. And I would say everything I said was that absolutely everything that, you know, that we have the same feelings, same desires, same ambition, same what? We're ordinary. We're not extraordinary like Stella. And we talk about things like this that we're not extraordinary because we do things that is really what are we supposed to do? Like we still need to do the things that we need to do every day. We just want a cool way of doing it, you know? I just wish people knew that we're just doing what everyone else does that we want, what everyone else has, that, you know, our laws are just as valuable as anyone else's. And that access is so important and it benefits everyone. If we made society accessible, it would help the elderly. It would help mothers of children. It would help families. It would help everyone to just have a better quality of life. People think of X, this is such a nice thing. But actually accessible architecture is still important. Accessible fashion is so important in our go good quality health care. You know, all these things matter. And I wish that people saw it as not our little thing, but as things that benefit everyone. So I guess I wish I could challenge what they think of us and the expectations of us, but also what society needs to do and the shift to seeing us as normal and ordinary.
Peta [00:20:14] What do you hope for in the future for people with disabilities? I feel like this question is perfect for you.
Alyce [00:20:19] I want them to be able to achieve anything that they dream of that any other person can do. I want disability and not be seen in negative terms. I want it to be seen as natural, ordinary part of life. Part of the ageing process. Our bodies are not infinitely amazing and regenerative, yet they're sellable and people get sick. And it's just part of being a human being. And I don't want it to be extraordinary. I just want it to be ordinary and accommodated and just. Yeah. Boring.
Peta [00:20:55] Boring, but fabulous.
Alyce [00:20:57] Yes. Boring and fabulous. Yes. Yes. I love that.
Peta [00:21:01] It's been a pleasure talking to you, Alyce. Thank you so much for your time.
Alyce [00:21:05] It's been an absolute joy to see you Peta. And thank you for having me on your show.
Peta [00:21:12] Thank you for listening to this week's episode. I hope you enjoyed it. Thank you so much for putting up with my very husky voice. I thoroughly enjoyed talking to Elise today. If you did enjoy the podcast, can I encourage you to leave a writing interview? If you listen on Apple Podcasts, it's really important for the podcast to be found by more people or hit follow on whatever podcasting platform you're listening on. If you'd like to ask me a question for a future episode of the podcast, or suggest a guest for a future episode of the podcast, you can contact me via my email, which is icantstandpodcast@gmail.com. You can message me on my Instagram. My handle is at Peter Hook, spelt PTA h i k e. Or you can message me through my website icantstandpodcast.com. But until next week. Have a good one guys I.