Being Bed Bound and Living With an Energy-Limiting Illness: Amelia Tang’s Story

In this episode, Peta speaks with model, actor and advocate Amelia Tang about what life looks like when illness reshapes everything. Amelia shares their experience of becoming disabled as a teenager, the long periods they spent bedbound, and how community kept them connected when they could barely tolerate light or sound.

They talk about modelling with a feeding tube, navigating friendships through chronic illness, and the daily realities of fatigue management. Amelia also speaks about their work supporting disabled people in group homes through the Young People in Nursing Homes National Alliance, and why accessible housing is essential for independence.

A thoughtful and generous conversation about identity, energy, and rebuilding a life at a different pace.

Connect with Amelia

Instagram: https://www.instagram.com/amelia.viviennesuying/?hl=en

Connect with Peta Hooke

Instagram: @petahooke

Website: www.icantstandpodcast.com

Email: icantstandpodcast@gmail.com

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Episode Transcript:

00:00:02

Peta: Hello, and welcome to the I Can't Stand Podcast, the show that explores what it's like to live with a disability. I'm Peta Hooke, I have several palsy and I'm your hosts. Every week I sit down with remarkable people who's lived experiences are reshaping how disability is understood, not just within our community, but by non disabled people too. This week, I'm joined by Amelia Tang. Amelia is queer gender diverse, a Chinese Australian model an actor. They speak openly about acquiring their disability as a teenager and the long periods of being bed bound that they have lived through. We talk about her work modeling with a feeding tube and as an actor, her fatigue management strategies, and the fact that friendships can reshape themselves when illnesses become severe. Amelia also works supporting disabled people through the Young People in Nursing Homes National Alliance. I hope you enjoy this episode. Let's get into it.

00:01:18

Amelia: Thank you so much Peta for inviting me to my very first podcast experience. I am a thirty one year old queer gender diverse person Chinese Australian greyhound parents. I think I have an appreciation for things that I couldn't do when I was bedbound. So waking up every day, having the privilege of getting out of bed, eating breakfast, being able to leave my bedroom is one thing. And yeah, a wild night out on the town for me is like the supermarket, so.

00:01:56

Peta: I relate particularly in winter. First of all, very importantly, what is your name, my.

00:02:02

Amelia: Friend, Amelia, I've completely missed that.

00:02:06

Peta: Well, it's lovely to have you on here. Amelia. You've described yourself in my research as very opinionated. Why do you think you're that way? Do you think it's because you have a disability and you know how life can be a bit unfair sometimes? Was it your upbringing or maybe a bit of both.

00:02:27

Amelia: I'd say I'm a strong believer in living your values, so caring for those who have it worse than you do. I guess I can give an example. I have a friend with a disability that's currently lacking in NDAs supports, and so my friends and I have all contributed to assisting them with life admin physically providing support they haven't been able to receive through NDIS, and coordinating their medical care. I would say I'm very opinionated when it comes to people looking out for each other, reaching out to that friend who's had a tough time lately, and giving support if you can to those, yeah that need it. I think individualism has become quite entrenched in Western society today, and we really do depend on each other for support, and we should be giving each other support, supporting our disabled friends, even those overseas in countries that may not have the resources we do. I mean, the place in the world right now with the most disabled children is Palestine. And yeah, I myself have lived through what I can honestly describe as a system failure and spend years of my life incredibly isolated and in bed, so I know what it's like to go through hardship, and yeah, and see I need to support those who may be also neglected by the systems built to support us.

00:04:08

Peta: Clearly, you're such a good disability ally to other disabled people in the community, like your real asset, clearly, and it's lovely and you know, as we all should, we should support people. But I think sometimes we can forget, because you know, speaking is a disabled person in life can be really hard, just ourselves, and I often forget that my fellow disabled people could also use a little bit of help from me. So thank you for that reminder. I appreciate it. So what does good support look like to you?

00:04:43

Amelia: I would say asking for consent in everything that someone is needing support for, so centering their voice and centering what they think they need and not what you think they need. I'd say good support is having a range of different people that can step in and not relying on just one person. And yeah, people encouraging independence where possible, and respecting people when they can't say that I can't do something.

00:05:32

Peta: Have you always considered yourself to be disabled, Amelia? And have you always been quite comfortable with accepting support? How's your relationship with that being.

00:05:43

Amelia: So I caught a virus when I was fourteen, So I haven't always identified as disabled. I haven't acquired disability. I think eventually considered myself disabled from about nineteen twenty. Initially being a support worker, it felt amazing to do things for other people, and so accepting that I needed support was a massive shift, and it brought up a lot of grief for me, you know, eight years ago, and I was honestly quite jealous of my support workers, which was an interesting dynamic. Yeah, I was jealous that they had the ability to work and I didn't at the time.

00:06:33

Peta: I mean, I think that's failing understandable, and thanks for being honest. How did you work through that? Because obviously, and I've had support workers in my life, you have to trust them implicitly for the relationship to work. You've got to have Collie communication, but you've got to trust them. I think jealousy is a common thing that we all have to manage when you have a disability, because there are things that we can't do that we probably wish we could, and when it's in front of us, it could be really confronting. So how did you work through that and what aspects in particular really triggered that in you?

00:07:11

Amelia: Working through the grief was really tough. I would often break down in tears after a shift just seeing another young person at the time being able to do what I used to do. I think because I saw so much of myself in It was like me being reflected back, but as someone who could do the things that I then couldn't do. So it was very confronting. I think, just every single day being forced to look at the person that I used to be. And I think just time and acceptance that you know, I didn't know how long I wasn't going to be able to do the job. And yeah, really just acceptance and a commitment to figuring out how to do life with my health having declined further.

00:08:14

Peta: Did you have any guidance on how to do that? Like, obviously you caught a virus, and like, how did you, you know, come to the place that you are now.

00:08:27

Amelia: I didn't have any guidance on how to do things. Initially when I was a teenager, I was quite isolated due to the virus causing me to become bedbound and not being able to go to school for a period of time. This might sound a bit funny, but honestly watching watching the TV show Buffy the Vampire Slayer really helped me. It was I think, you know, we look for meaning in things that aren't necessarily about what we're going through. But you know, Buffy was like fighting all these vampires and like trying to exist in a world that was like very against her, and I think that I very much related to the show at that time in my life as a teenager and really appreciated the kind of like role model. I guess.

00:09:25

Peta: How long were you in bed Amilia.

00:09:29

Amelia: The first time when I was like fourteen fifteen, it was a good like seven or eight months to the point where it was like extremely difficult to walk to the toilet or I had to majorly prepare for that without passing out. The next time was probably in twenty seventeen twenty eighteen. That was kind of on and off, more so in hospital, and then also from about twenty nineteen twenty twenty that was you know, more completely bedbounds, so everything from toileting to eating to you know, everything's done in bed. And yeah, not being able to access the community is as you would know, like extremely difficult and extremely isolating. And I think I was just lucky, honestly that the pandemic was bringing events and medical appointments to people's homes at the time, so that my world could open up a bit. While everyone else's world was getting smaller, mine was opening up because suddenly medical appointments were available online, and you know, there were trivia nights online and art galleries and all of that kind of fun stuff.

00:10:50

Peta: So, yeah, how did you manage life in bed? Both mentally? Like obviously I'm assuming you had to sleep quite a lot. Yeah, no, our brains really need a good rest. Yeah, they're tried to recover from something. Did you do craft? You obviously watched Buffy the Vampire is what else did you do?

00:11:13

Amelia: So at my very worst, it wasn't possible to do anything but sleep. I was pretty much only awake for a few hours a day, and that was maybe I'd hear a support worker and doing a bedside commode, or they'd sit me up for some hydration through my feeding tube. Honestly, cognitively, it was very, very difficult to think, so all of my thinking energy would go towards trying to connect with others that had the same experiences with me online in support groups. So I think, honestly like finding other people in the world that were in the same position saved me at that time. I don't know how I would have gotten through it without like the community of people that also had any CFS. I guess there's an incredibly difficult sensory limitation as well, so not being able to tolerate light or sound, it's like an assault to the sensors. Any stimulation in that state, you know, even looking at a phone is exhausting. It's so hard to describe to people, and it's so difficult to understand being in that position until you've experienced it yourself. But just everything is just so jarring. It's like living with a fire alarm on constantly, noise wise, or you know, trying to think through people shouting at you.

00:12:54

Peta: How did you go with friends? Because when I was really sick, I found it difficult to fully explain what I'd been through, Like obviously I was a lot younger at the time, I was a child, but my friends could not relate to what I was what I'd gone through, so I didn't really talk about it. I just got on with it and tried to assimilate. I suppose, how did you go with friends? Because obviously for a time there you wouldn't been able to connect with them at all.

00:13:27

Amelia: I didn't realize how dependent my friendships were on me being able to physically go and see them, go and see people. And you know, I think this might sound a bit depressing, but I think that at the end of the day, you think your friendships are you know, through sickness and in health, and if you're in hospital a lot, and if you're you know, house bound or bedbound, they will come and see you and come and visit you, and I think many people find that that's not always the case. Unfortunately, through that loss, you do find new people, and you find people who I guess might be within the same reality as you are. And yeah, it's been great to find community.

00:14:23

Peta: I always say that disability gives you the best bullshit radar. You know, you just end up connecting with genuine people who are willing to be there for you. As you said at the top of the show, how important it is to be there for other people. And I think that, Yeah, I think when you're disabled or have a disability or a chronic illness, you tend to find the good people.

00:14:49

Amelia: Yeah, definitely.

00:14:51

Peta: So taking a total three sixty from that, how did you go from there to getting into modeling and acting?

00:15:00

Amelia: When I was five, I started performing on stage. I had a parent that was an events performer, and I used to get on just for fun, like being invited on stage sometimes to sing with him. So I think it was like quite natural and normal for me to be doing something in front of an audience. From when I was quite young. I was an extra for a show called Dead Gorgeous on ABC three. When I was fifteen, I don't know how I did it, to be honest, and I think I probably put myself through a lot trying to do that TV show, But I really enjoyed it, and I did like a Disney Channel mini series when I was seventeen. It was just an extra on that as well. I did a lot of musical theater, and I think that, you know, had I not got the virus that made me disabled, I probably would have pursued musical theater as a career. I knew someone that was with an inclusive talent agency and saw what she was doing and thought that, Okay, maybe I can modify, modify what I used to do. Like modeling, you don't have to move around as much, you don't have to sing and dance, and I can't do that anymore.

00:16:27

Peta: So, and I know you made the decision of modeling with a feeding tube. What was that process like for you?

00:16:37

Amelia: Honestly, it wasn't something that I consciously decided when I went into things. It was just because my feeding tube is as natural to me as like my nose or my mouth. But it was something that I was mindful of in regards to the lack of representation that we don't see in regards to devices in the media, there's there's young kids out there with like in a wheelchair or that has a medical device, thinking like, these people don't look like me. And I think that I was just conscious going into it how important it was to see that representation.

00:17:20

Peta: I totally agree with you. When I was a young little girl in my wheelchair, like I've been in a wheelchair since I was five, I used to think, Oh, they're always old people, they're always white, Like, yeah, I'm white, I know that, but like they's more than that.

00:17:35

Amelia: You know. Yeah, yeah.

00:17:39

Peta: Talking about the modeling and you know, creative arts industries, how do you wish they could be more accessible to disabled people?

00:17:49

Amelia: Oh? Honestly, I've had pretty good experiences. I'm not sure if that would have been different had I've been with a different agency. I'm not sure. But there's a form that I have with ZBD my talent agency, called an access writ a form and it goes through great detail what I would need on set. And I once had an entire TV commercial set not wear aerosol deodorant and just not wear any perfume because of potential like anophol access on set and the piece of paper that I resuved before the day was like, there will be customers coming in and out of the store on the day, so like anophal access could be imminent, like beware kind of thing. And I was like, I don't need a nurse. It's fine. I have my support worker with an EpiPen, and they like fired a nurse for me and everything. So I think I've just been really lucky. And I don't I know that there would have been many experiences before mine that led to it being so good.

00:18:59

Peta: I'm so glad you have that experience. That's so lovely to hear.

00:19:02

Amelia: Yeah, yeah, that's amazing. Great.

00:19:05

Peta: Do you still get the same amount of opportunities that you would like, like the old disability chest out of disability employment, it's always tricky.

00:19:16

Amelia: I think that there is a thing in the industry that is like, yes, you can be diverse, but you can only be one type of diverse. You can be a person of color, but you can't be disabled as well. You can be class sized, but you can't also be in a wheelchair. So I think that diversity has been pushed for and we have achieved it in a lot of ways. But I think that two intersections is a little bit too much. It's a little bit scary for the industry right now, and you know, one day if that's able to be changed, I love to see that.

00:19:57

Peta: I'd love to talk to you about fatigue management. You might mean. On my Instagram this morning, I was talking about the fact that I'm really fatigued. Yea, So it's like a common thing that I live with every day. Yeah, having an energy limiting disability. I'd love to hear your perspective.

00:20:15

Amelia: I'll start with physical physically, you know, again, it is very dependent on your physical abilities. But something as simple as finding a different way to drink lifting a heavy water bottle can be very straining. So I use like a camel back type thing, you know, like a drinking reservoir, so I don't have to lift anything heavy when I'm drinking. I use lighter cutlery, not necessarily metal. Cognitively, I limit conversation. It really depends on your personal situation and personal care. But I'm unfortunately not able to shower as much as I want to, so using other methods like bed bath wipes. Pacing out tasks is really important. So it could look as tedious and require as much discipline as waking up really slowly, eating breakfast, then resting for thirty minutes, like having no stimulation, putting a blindfold on, putting earplugs in. It depends what that looks like for you, rest that resting for a bit and then going to get dressed and then resting and then doing another activity and rest and so on. And I think, yeah, people don't talk about how important it is also to schedule, schedule rest and schedule your your roster so it like in advance, so that you don't set yourself up for fatigue and failure in terms of exertion. Kellyhealth is great, automated blinds, lights as your friend. Yeah, there's it's it's a big topic.

00:22:18

Speaker 3: So so given that our world is very productivity focused and work focused, how do you manage that?

00:22:30

Amelia: Yeah? So I think it is all about unlearning. And I think that this comes into your questions surrounding like how did you adjust to becoming disabled and whatnot. I think that productivity can look very different in depending on your situation. Like rest for me is productive because it allows me to function and it prevents deterioration and it allows me to do simple tasks. I think that you know, we live in a capitalist society that values work and productivity and go, go, go and do as much as you can, and so I think it is really incredibly difficult to slow down and unlearn some of that and make sure that you are taking care of yourself.

00:23:28

Peta: I know that you work at the Young People in Nursing Home's National Alliance. What drew you to that role?

00:23:37

Amelia: I think a lot of non disabled people don't realize how little, say, wheelchair accessible rentals there are out there. You know, how much that can quite literally trap people in their houses, in their beds. Is horrific to think about just because they can't get around the house or community. Six percent of people in the NDIS are eligible for specialist disability accommodation and supported independent living funding, so that housing is built with disability in mind. And my own experiences of housing injustice and knowing how difficult it is to navigate applying for and finding specialist disability accommodation that has your best interests at heart is so difficult. You know, people deserve to live in safe, affordable environments that allow them to live their lives to the fullest. And yeah, with the Tenant Voice Project, we've been lucky enough to get funding through the NDIA to iron out some of the issues we're seeing with specialist disability, accommodation and supported independent lif We do want to give people a voice to drive SDA policy. With it only being ten years old, we want to ensure it's sustainable not just for the investors and the providers, but for the people that it was made for and make sure that participants are set up to live in their own homes as best they can. Yeah.

00:25:23

Peta: Way back in the day when I first started the podcast, I did an episode about nursing homes and young people living in nursing oaks, and it was the episode that I got the most backlashed because I was quite negative towards that environment of young people being in that environment. And I will get into what people said that they have a right to their opinion, but yeah, I always think about people who are in nursing homes that don't need to be. Yeah, is that what drives do you get driven by that?

00:25:55

Amelia: Senator Jordan steel John recently said in Parliament that they're are you know? He stated that there are about nine hundred and fifty nine people across the country that are under sixty five and living in a nursing home. It's really difficult to know where how to get these people into places where they can be with their peers or you know, independently living. But yeah, it's a massive issue that I really feel for certain people in my particular illness community that are in nursing homes due to, you know, just not having anywhere else to go. Really.

00:26:44

Peta: I started this podcast back in twenty twenty one, and I started it because I was sick at people asking me the same question when I went out in public familia and that was what happened to you? Like I know so many people. Yeah, you know, I'm happy to talk about my disability, it's fine. But also I'm aware that that's not the case for everyone, and I shouldn't have to answer that a stranger. It's not required. So I created the podcast. But I'd love to hear from you. If you could pick one question or one statement to never hear from a stranger again, what would it be.

00:27:21

Amelia: First of all, I can totally relate to what happened to you. I think when I used to be on crutches, it looks like a temporary disability. But even even then, it's just Yeah, I think people often see a younger person with a mobility aid and think it's temporary. But yeah, I think more recently, probably just in a certain context on dating apps asking me, I invite people to ask me about my access needs, but if they're asking me to educate them on my conditions, I'm kind of like, I just won't reply because I might just google it. I just can't be bothered. I don't have the energy.

00:28:09

Peta: We could have a whole separate podcast about dating and disability.

00:28:14

Amelia: It is a.

00:28:15

Peta: Very interesting world out there, that's special.

00:28:18

Amelia: Yeah.

00:28:18

Peta: Yeah, I wish you luck. I hope you find love. Forget. It's very difficult. That's all I'll say.

00:28:25

Peta: Thank you, Thank you so much for listening to this episode of the I Can't Stand Podcast. If you enjoy today's conversation, the best way you can support the show is by sharing it with a friend or posting about it on social media, and if you have a moment, leaving a rating and review helps more people find these stories.

00:28:50

Peta: Don't forget. You can always send me an email I Can't Stand Podcast at gmail dot com, or you can follow me.

00:28:57

Speaker 4: Over on Instagram at Peterhook.

00:29:00

Peta: I'll see you next week, I would like to respectfully acknowledge they were wondery and bun wrong people of the Call and nation of which I recall the podcast to day, and I pay my respects to both elders past and present, along with and especially to those in the First Nation's communities who are disabled themselves