Do you feel like a burden?

In the third and final episode of the series,we explore what feels like the touchiest and most personal of the three topics. Do our disabilities make us feel like burdens? In Pieta’s work supporting those with spinal cord injuries, one of the deepest and most painful challenges for some is our relationship with ourselves when we suddenly rely on support from loved ones. Is it a common experience to feel like a burden on our families?

We talk about how we feel like we contribute, or how we are kind enough to ourselves to remember that no human is an island, and it is okay to receive help sometimes. In this episode, our friends share how they’ve moved and grown through the feeling of being a burden, and how surrounding themselves with the right people reminds them that the reality is, to the people who love us for us, we’re not burdens at all. 

Listen to the podcast interview between Pieta Bouma and Olivia Shivas, or read the transcript below.

Pieta Bouma: Kia ora e te whānau, and welcome to our third and final episode. Today we are here to talk about what I think is the touchiest, most sensitive of the three topics. I almost felt bad asking our contributors to answer these questions because they're deep and they’re personal, but I think it's time we talk about it. So today we're talking about does your disability make you feel like a burden? Why? Where does this come from? How do we cleanse ourselves of this feeling and all things related with again three guests? Olivia, what are your thoughts on this topic? 

Olivia Shivas: Yeah, it opens a big can of worms. That word itself, like it feels heavy. I mean, burden is almost like weight, right? So it does feel heavy. I guess there are so many different ways of looking at it from through a disability lens. There’s burden as what society thinks is burden, is what might be perceived a burden, but isn't actually a burden in reality. This is what you may personally think about the word burden and being a burden. But I think what's also most important is this conversation is like, what do we do to, I guess, combat. It was, yeah, still live full lives despite what society may think about burdens. 

PB: Yeah, totally. And I think a lot of it is internalised. And a lot of my work with people who have just had spinal cord injuries, it's something that they struggle with, is all the extra needs they have of the people closest to them and around them, and the help they need doing things they used to be able to do all by themselves. And I'm often asked like, what if roles were switched? And what if it was your partner, your sister or whatever? And they're always like, oh, like, of course I would help. Like it wouldn't be, it wouldn't be a burden at all. But yet we still feel ourselves sometimes that having extra needs or requirements makes us a burden. And I think it often is self-imposed.

OS: And I think when you've had a life experience, perhaps being not disabled and it changes, I think that additional feeling of being a burden and maybe is stronger compared to, like me, I was always was born with a disability. I'm not saying I've always felt like a burden, but I've always been used to living with life a particular way and having extra help and support has just been kind of built into my life. Yeah since birth. So like, I've been used to, you know, bossing people around to help me. For example. 

PB: Self-advocating. 

OS: Yeah, yeah, that's a good way to reframe it.

PB: But for people who have that sudden shift and perhaps are not as comfortable with it. Yeah. There's just so many different experiences which inform how you may feel about disability being a burden. Yeah, definitely. And so much of your own self-worth and confidence as well. And whether you're happy to ask for things to be changed and moved in for help because you know you deserve it, or whether that's something that's really difficult for you, I think it's a real skill.

OS: Yeah. And I think and I think other experiences in life as you go through and bring up different feelings about burden as well. So it's like, being a burden within your group of friends or like in a like romantic relationship with your partner or like with your family. Like, I feel like there's different levels and experiences of burden that happen depending on like, yeah. And all comes from your expectations of what those relationships.

PB: Yes, yes, yes to be contributing. Yeah, yeah. The first question we asked our friends was, does being disabled make you feel like a burden? Why or why not? Just to establish if it was other people who were feeling like this as well? First up, we've got Nigel.

Nigel: That's a really good question. I really don't believe I have a burden complex. I just get on with life. I mean, I have an amazing family and group of friends that help me in life when I need it. And, although my disability is less visual, noticeably than others, I guess, it's more obvious when I walk up stairs or need to carry something heavy.

OS: I think that like visual element, in terms of what society may put on you as being a burden is also an interesting one. Like if your disability is visual, you may kind of come across more, I don't know, like comments. People expect you to need more. Yes. If they can see it. Yes. Whereas I think if you've got an invisible disability, it's more you have to ask for the accommodations because people don't expect you to have needs.

PB: Yeah. Yeah yeah. Access related needs. Yeah. Love that self-acceptance though. Like I don't he, he didn't feel like he had a burden complex. It was just getting on with life and like just a real acceptance of this is the way things are. 

OS: Yeah. And reframing it as just needing help sometimes, rather than I'm a burden to all of them.

PB: Yeah. Totally. Which is a very healthy way to think about it because we all need help sometimes at the end of the day also. Let's hear what Jaden thinks if he feels like a burden.

Jaden: I don't feel like a burden. But I had to unlearn a lot to get here. Growing up, I saw how people viewed disability as something as sad, inconvenient, or limiting. I carried those messages without even realising it. But over time, I understood that these ideas weren't mine. They came from a world that still doesn't fully understand disability. Now, I challenge those assumptions. I'm not a burden. I'm someone navigating a world that wasn't built for me. And that doesn't make me any less worthy.

PB: Such a good point about the narrative that society puts on disability. And like I was talking before about how a lot of it is internalised and self-imposed, but it's not really in like self-imposed. It isn't. It doesn't come from us. It comes from all these messages we get about what it means to have a disability and the tragedy of that, all the stuff.

OS: Yeah. It's not our fault if like, yeah, if that becomes internalised and like you said, like the unlearning process is really important. But also, for example, if we lived in worlds that were actually fully accessible and our needs were met, then we would be less burdened. 

PB: No one would then if we could just go out and do everything we needed to, just like everyone else does. Yeah, yeah, yeah. It is the society that's disabling us, not our own bodies or minds. Very important distinction, I think. Shall we hear from Naomi.

Naomi: Yes it does. It doesn't so much anymore. Just because I have friends that support me and just know what I need and what I don't need. So having people that are literally by your side and who genuinely supports you in life. But before I still do have days where I do feel like I am a burden simply because I feel like people are constantly looking for ways to make things easier for me, and I'm constantly thinking about how I could make things easier for them to be able to work with me. So it's like a lot of back and forth, and it's mentally draining sometimes. But I would say who you are, surround yourself with definitely helps.

PB: Such a good point. Again, like it depends on the situation you're in, whether you feel like a burden or not, because a lot of it is based on how other people are reacting or their behavior around any extra accommodations or the extra thought that needs to go into, including you. 

OS: And the mental drain that she talks about in terms of like the fatigue of like always thinking about, okay, what do I need and place so I can access or do this and is it going to take help from this person or is it me kind of initiating the help or what needs to happen?

PB: Yeah, having to communicate it all the time and also like having everyone thinking about you all the time like that was something I struggled with for a while, was like being the centre of attention. And I wanted to just be like, blend into the group. But I was the one who needed help and people didn't know how I could join it, and it was all on me to have to communicate that to people around me of how I wanted to be held and the problem solving. So it sounds like people can relate to this idea of feeling like a burden. 

OS: Even on a range of answers. 

PB: Had of range. Yeah. So Jaden spoke about her having to had unlearn a lot of the ideas he'd been given by society that made him feel like a burden. And Naomi as well, sounded like she had grown through it as well. Sounds like it's something a lot of people have come through, I guess. Process. Yeah, yeah. Which is interesting. And brings us to our next question. Where does this burden complex, this feeling of being like a burden? Where does it come from? Let's start with Nigel again.

Nigel: No. I find in life that people love to help others. Actually, when they're asked, it's an opportunity for them. The challenge is sometimes find it hard to ask that something a lot of people with less obvious disabilities need to work on, I feel.

PB: Yeah. Hey. So right. People do love to help sometimes too much, but it's it was the frameshift I had to to go through to be like, I'm giving this person an opportunity to feel like a good person.

OS: Feel like a hero. 

PB: Really! Yeah. They love it. And it's like a shift to go from thinking you're asking for something to be like, actually, I'm giving this person an opportunity.

OS: Yeah. And like, when you think about it, when people ask me to help them, I'm like so chuffed. I'm like, yeah, yeah, I've got a certain set of skills that like, I can help you with. So it's like not about who's more worthy of receiving the help or of helping. It's actually like symbiotic in terms of like, you know, we all have the ability to like give and take.

PB: And we all love to feel helpful and that's a great way to think about it. Let's hear from Jaden then.

Jaden: I think that the burden context comes from outdated stories. Society tells about disability, that a lot of people are suffering, and that we create extra work for the people around us. Disabilities too often seen as limitation instead of possibility. Even well-meaning people try to protect us from disappointment, which quietly undermines our confidence. Over time, those views can sink in and we stop believing we're too much. But the problem was never us. It's the assumptions that need changing.

PB: The problem was never us, love that. And is like I think he's pointing out this real deficit mindset around disability where it's like the needs and the requirements and the extra thought, and it ignores all of the strengths that people with disabilities bring. And they're like inclusive and the extra skills and problem solving and creativity that we might bring. Puts sort of the focus on the wrong thing. Let's see what Naomi thinks about where the burden complex might be coming from.

Naomi: As someone with a disability, I've always struggled with feeling like I was the burden. I've always felt like I was in the way simply because society doesn't think about disability and our needs. And it's things like people having to make the adjustment for me to be able to fit and be included. It's things like not being able to access or do the same things that people can do instead, having I’m having to find a different route just for me to be able to fit into society. And as someone who is also Pacific, when you have someone with a disability and your family, it's viewed as a curse or it's viewed as something shameful and that's been passed down through generations, and it still is to this day, I feel like. And so that itself is just another layer of burden on the family, but also on the person as well. So it's also like a lack of representation and yeah.

OS: Yeah, yeah, that covers a real range of like different places. What comes from like media representation, storytelling, narratives, cultural aspects in terms of like how that frames up the idea of disability and whether it seemed as a burden or a curse, or if it's just part of you as a person, without a label. 

PB: Yeah, that would be such an interesting thing to explore further is different cultural interpretations of disability as well, but I think it's also a generational thing. Like she spoke of the the intergenerational idea of it as a curse and like the shame that comes with that, that we have to grow out of. And I like to think that we're moving forwards out of that now and learning to let go of our shame, because even there used to be things like ugly laws saying that ugly people, as in people with deformities or disabilities, weren't to be publicly viewed. And so to be in a society today where we're like demanding representation on screen and then as models and actors and, I like to think that we can leave that attitude of shame, which is so heavy to carry, leave that in the past, and that we are moving through that. Yeah, yeah, yeah. We are not

OS: We are not eyesores.

PB: No please. Yeah. So like, clearly a lot of messages coming from all around, a lot of like ingrained ideas about disabilities being a difficult thing. 

OS: And it's such a tricky thing to navigate because your value as a person is such a foundational thing to you, your self-worth. And I think yeah that that burden part of it as you know, can play a huge role in your self-worth. And I guess seeing how you fit in the world, but also it can really, limit or do the opposite of, like allowing opportunities in your life and what you think you're capable of. Oh big topic. 

PB: Yeah, totally. Like no one should feel like a burden. And it does take a lot of self-confidence to require extra things, but know that it's not your fault that the world is inaccessible, or that things aren't as easy for you. And to know that you deserve those things, and that you are contributing in other ways, and your presence is enough of a gift to the people around you that they want to be putting the extra effort in to include you. Yeah, I think it does take a certain amount of self-worth and confidence to feel like you're entitled to those things. So our final question was, what's one thing you do or think that makes you feel like less like a burden?

Nigel: I actually have a strong Christian faith, and with that comes a belief and knowledge that God created me as I am. And he loves me. And although I wish I didn't have a disability, somehow it keeps me grounded and reliant not just on him, but the others around me. I mean, I sort of think life is not really meant to be done alone, and disability provides the opportunity to others to not just think about themselves, but love and help others. And my Christian faith also puts me in a in a community of loving and caring people. That is such a great support to me and my family.

PB: That's so beautiful he’s clearly surrounded by so many people that are so loving and willing to help. That sort of takes away that burden complex a bit. 

OS: And that we all live in a community and we all get to meet to share the load of helping and supporting each other should never be down on like one person. And I think, you know, having some kind of like anchor to help centre us, you know, faith or you know, or you or your friends or your whānau. Yeah. Or like, to help you through those tough times. And. Yeah, it's about sharing the load.

PB: Yeah. And I think that's another source of the burden complex. Is this, like, very modern Western idea that we are individuals and we should be able to look after ourselves and do everything for ourselves. And if you can't, then you pay someone to do it. And it's like, it's very, it goes against what it means to be a human. I think, like with social animals, no one is out here doing it by ourselves. Like even the most able bodied, capable person in the world needs at least some sort of emotional social support and like, no one's meant to be out here doing everything themselves. And, I think if we viewed ourselves more as a collective and a community, it would take that expectation off of ourselves to be able to do everything without even needing any help or take that pressure off. What have we got from Jaden?

Jaden: What helps me is knowing that I'm creating a space for others by showing what's possible. Every time I challenge a stereotype, I break from a barrier. I'm not just changing my life, I'm opening doors for the next person. The power of possible mindset remind me to focus on growth, not limit. I don't need to prove my work, I just need to live it. And when I lead with purpose and possibility, there's no space left to feel like a burden.

PB: Very inspirational. We've got a go getter here on our hands. Thank you. Jaden. But yeah, he's so right in that, like, you sort of light the way for yourself. And when you believe in yourself and believe what you deserve, it gives an example of how, how things could be. 

OS: Yeah. And I don’t think any kind of negative experiences is wasted, it is like going through a time of your life where you feel like a burden and it's really heavy and it feels awful, but I feel like there's always something that you can like, as awful as it is at the time, that it's something to learn. And yeah, like you said, it like creating pathways for other people to see, you know, seeing it for other young disabled people, to see other people make it through. And being, you know, not being seen as a burden, reflects back on other people as well.

PB: Yeah. And like every time you have to demand some sort of access or things be improved or you complain about something not being accessible, like it is nice to carry the risk to your community with you and be like, this isn't actually just about me. This is making it better for the next person who comes along and has the same problem, whether that's like educating someone or, requesting that better physical accessibility, things get put in place like it's never just about you. What does Naomi have to say about how she feels less like a burden.

Naomi: Just playing my part as a friend. Contributing to my plans that I make with my friends or just being the friend that they need. Contributing to my household, contributing to my team, contributing to my own self-care. I guess, helps me with my mental wellbeing because I feel like that's also another factor that makes me feel less like a burden is just reframing how I think about things, and also how I perceive things. The brain is like the trickiest part of your body and it sometimes tells you, things that's not even there or talented things that's not as relevant as it needs to be, and say that also like, chaos around yourself with also plays a huge factor and feeling like a perceived burden, because who you surround yourself with is a reflection of who you are as a person and what your character is like. And yeah.

PB: And the right people will never make you feel like a burden. So important to be with people who are happy to help. And I think, you know what I found? Most people are at the end of the day. Yeah, yeah. 

OS: And I like what she really like when she says about, like, focusing on the wrong, like how easy it is to focus on the wrong thing and re-shift that. Like, I remember in the early days when my boyfriend and I were dating, and it was one of the first times I, like, went over to his family's house, and initially it was just me and him there. But the house is so not accessible. It's like on like seven different levels and there's all these stairs. And so my wheelchair is kind of sat in the foyer in here too, like piggyback slash koala-bear carry me around the whole house. And I think most of that time I was like, not in my chair. I was like, either being carried on the couch or on a different chair. And I remember like, my chair was like, I don't know, a few metres away from me, up the stairs. And I was like feeling a bit like quiet. And I did tell him I was like, oh, probably feeling a bit just, I just anxious not being in my chair. And then I was just sort of having a bit of a cry because I was like, kind of hit me. I was like, oh my gosh, what if he realises that I'm like, too much for him? And he's literally carrying me? I'm like a physical burden right now. But he was just so understanding and so sweet about it. He was like, I don't mind carrying you because it means I can be close to you. 

PB: So cute. Oh, sweet.

OS: And I probably cried more because I was like, oh, he's so wonderful. That is so sweet. I think like we focus on the wrong thing sometimes, that in that moment I was like, oh, I'm just focused on the fact that he has to carry me around, but in his head, like was saying, people like being hero, they like carrying me around. 

PB: They do.

OS: And then it kind of helped me reframe and think about, like, you know what? I can bring to not just my relationship with him, but, you know, relationships, my friendships. Like, I get great wheelchair parking, you know, they're more of the burden when we need to park far away. So, yeah. 

PB: Yeah, literally so embarrassing. And it's like Naomi was saying that your brain sometimes lies to you and it's like you are all in your head being like, I'm such a burden. He's not thinking about that at all. Like he's just super happy to be carrying you around. And so much of it is this idea we get of ourselves. And it's just not based in truth at all. Like it's so detached from what other people are feeling and thinking in the exact same moment. Yeah. But there is like so much we contribute in our own ways, not only parking also.

OS: Great personalities, yeah. Great looks, sense of humour like yeah.

PB: Exactly. So much and like different viewpoint on the world and and new fresh ideas, creative solutions like certain skills, again from having to problem solve every time. All the time. Yeah. And inside the house also. Yeah, it's like I think there's so much more to contribute than like physical.

OS: Totally like things like emotional and social support as important as well in any kind of relationship, whether it's your partner or your friends or your family. Like I think for me, and I know some other friends, we've kind got probably a sense of like resilience that maybe some other non-disabled friends don't have, because I kind of haven't had to, like, push through stuff that I've just forced to. And so things that might make them a little bit more upset or anxious, I seem to be able to like, brush it off maybe a little bit easier because I'm like, I had to face a million barriers today so I can get through this, you know? So I'm able to provide that additional emotional support. Yeah, I can lean on me for something because I probably, you know, I may have the tools to, to help them.

PB: Yeah, absolutely. The different life experience gives you like the ability to be a better friend in some ways because you've got this perspective on things and on life and yeah, it's a I think it does. I think being disabled does make you more compassionate and more resilient. And that is a helpful thing as a friend, to be able to provide. Big topic today. 

OS: Are you feeling lighter, less burdensome now? 

PB: It's good to talk. Yeah. And I, I hope that people benefit from listening to it as well. And knowing like if you do feel like a burden when you have extra requirements and needs or you can't keep up with the people you're around, you're not alone and feeling like that, but also like it's not necessarily something that anyone else thinks about you. 

OS: Likely people are worrying about their own problems. Yeah, not whether you're a burden or not.

PB: And probably feeling really good about the opportunity to help often. Yeah. Like things happen. Yeah. Thank you so much to our contributors. Again, like, this was a touchy topic and they all answered so gracefully and like clearly pulling on years and years of life experience. And it just means so much to have had such a variety of voices in this podcast, to be able to really, like, meat out the conversation. It's not just it's not just our experiences, it's the whole community. Come along for the ride with us. So hope that you all got something out of this conversation and that we can all remember that we are not burdens, and it is not our fault that our lives aren’t as easy for us as some other people seem to be, or that we need extra help.

Like we're all here to help each other and we're all going in the same direction at the end of the day, there's nothing to be ashamed of and having extra needs. Thank you for listening and if you've got any thoughts, feedbacks or anything else you wanted to add to the conversation, like the do list an email at kiaora@thedlist.co.nz and hope you have a day and a lifetime free of burdens and go forth feeling a little bit less alone.