Did your parents make you ableist?

How do our parents’ relationships with our disabilities shape who we grow up to be, and what we think of as appropriate behaviour? In the second episode of the podcast series, we reflect on disabled adults' relationships with their parents, and their feelings about how their parents may have done things well, or poorly, in how they were raised. Everyone’s parents have a big impact on who they become, but when you’re disabled, the way your parents explain your disability to you is formative in your identity as a disabled person.

Our friends weigh in - the good things their parents did, like encouraging them to go after all the same opportunities as their able bodied siblings as well as the bad, like avoiding talking about their disability based on some pretty dodgy expert advice. There’s no handbook to raising a disabled kid, but we have a good go at investigating what we should be doing to bring up confident disabled kids ready to face an inaccessible world. 

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

Pieta Bouma: Kia ora and welcome to another episode. I am here with my co-host Olivia and today we're talking about parents. All the helpful and unhelpful things they do when they're raising disabled children. Of course, coming from the perspective of the disabled children. I acquired my disability 18, in an accident, so I was sort of already an adult when I became disabled, which means I missed out on all of the fun of growing up and having your parents come to terms with your disability and sort of define that for you, and you're too young to really conceptualise it properly yourself. So I'm really interested to hear from our contributors today and from Olivia, who have had somewhat of a different experience than myself. Olivia, do you want to talk a little bit about your relationship with your parents or your parents relationship with your disability, more specifically?

Olivia Shivas: Yeah, I think it's really different when you grow up with a disability because you have all these childhood experiences that are very much defined by your disability and how your experience is different at school. And I'm also a third generation disabled person. So like, I've had this kind of history in my family with disability to a certain extent, was kind of like accepted and normal. But I'm also in a situation where I'm the only one who uses a chair. So I feel like I have quite a unique experience still, but yeah, I think like, I think because I was younger, I was maybe to a certain extent, maybe, protected from their own kind of like processing and perhaps grieving of not having necessarily the child they expected in a way. And so but in saying that, because it's all I've ever known and we've just had to learn to adapt and grow as a family with it, I think by the time, for example, I got to 18, it was just part of my life and it was part of my identity already established. Whereas for you, that was something that kind of came later on.

PB: Yeah, it was a big identity shift for me and for my parents, and I think I struggled a lot with the fact that I wasn't going through it myself like I wanted. It felt like it was something that only happened to me, but I had to accept that actually, it had also happened to my family and friends, and they had to learn to adjust to how I was different, after such a sudden change as well.

PB: But it's yeah, I'm really interested in your perspective and the perspective of probably most disabled people who grow up with their disability in one way or another, because you're sort of too young to really not know any different, but also to be able to have your own opinions. So I think in a lot of ways, what your parents think about disability shapes what you think about it, because they're the first people to really talk to you about it.

OS: Yeah, totally. I mean, they're the ones making the decisions. For me, when I was a child, I didn't really get much input. I mean, I could have had a little cry and spat about going to repeated like physio appointments or in class and things like that. But I do think, they probably had a lot more of an influence than if I became disabled later on in life, where, you know, you have the capacity and understanding to make your own decisions about your health and your, your care and that kind of stuff.

PB: Yeah. And so interesting, also like with you know, we all have a lot of internalised ableism, but when you're born disabled that gets passed onto you from your parents or from an older generation, whereas I think as soon as I became disabled, I was quite aware of it and able to sort of, you know, with younger generations coming through with generally more socially aware and more accepting and better with things like disability.

OS: Yeah. And if you had a, you know, parents who had a kind of maybe, older or more traditional view of disability and that informed the way you grew up and how you saw yourself, that could, to a certain extent be more harmful than, yeah, a younger person these days who becomes later disabled and maybe is a bit more socially aware accepting of difference.

PB: Yeah. And it could really affect your self-image especially like the way you might be treated differently than siblings or different expectations put on you. So how do you think your parents shaped your perception of disability?

OS: Yeah totally. When I think about this question, I keep thinking about like, like, it's hard to know, like the decision making process when I was a child, all I know is, like, they wanted me to, like, live the most full life possible. And I remember, like, in terms of what that looks like in reality was like pushing me to try as many things as possible, like I did violin lessons, I did swimming, I did horse riding, I did singing, I did dancing, I did all like a whole range of like, random things just to like and just to, like, get me involved and find something that I could enjoy and find community in.

OS: But I don't know if like it's also, I think what's interesting is I don't know if I would have done that, you know, whether I was disabled or not.

PB: Yeah. True. You'd never really know, I guess. Yeah. But they obviously didn't want to hold you back or stop you from experiencing any childhood activities or hobbies.

OS: Yeah, I didn't become a great dancer because I just so you know.

PB: Well, I didn't either, and I didn't have a disability. So it's not for all of us. So we started, again, we asked three friends to give us their thoughts so we could have a bit of a wide range of experiences. And we started off quite general. How do our parents’ relationships with our disabilities shape who we become?

PB: So let's hear from Amy what she has to say.

Amy: I think our parents’ relationships without disabilities has a huge role in shaping who we become. For the most part, my parents have been extremely supportive of me finding my place in life as a disabled person, finding my place in the sector I work in, finding my voice, finding my identity. They've been very, very supportive for the most part, and I think that has had a huge role in my success in the past few years with my personal life and my ability to live my best disabled life.

PB: We love that for you, Amy. All kids ever really need from their parents is just unconditional support, I think.

OS: And acceptance, like I know, like if you know, if the other parents who, for example, were like, oh no, like we don't want to give you that label, we don't want you to be disabled. Like Amy indicated, like she may have not got the right supports in place, you know.

PB: Yeah. And I think it probably is hard for parents to accept sometimes that their child is disabled because it's not what anyone ever imagines. And there's a lot of uncertainty about how much people can achieve with disabilities, especially if you're not experienced with it yourself. Interesting, different experience in your family where your your parents and your grandparents even already did have experience with disability.

PB: So probably were a little bit less afraid of the outcomes.

OS: They could see, how they really had full lives, you know, like good jobs, careers, families, partners and stuff like that. So although I'm sure my parents went through their own kind of, you know, process of like what my life might look like, I think maybe they did have a few less fears than who has absolutely nothing to do with disability in the past.

PB: Yeah, it wasn't a tragedy to them. It was just a slight, like adjusting of expectations maybe. All right, let's hear what Evan has to say.

Evan: We had three children in our family. I have a lived experience of disability. My older brother and younger sister were both, non-disabled. And yeah mum, they brought us up as much as possible the same. So kind of growing up thinking that I was just like everybody else. It also helped to be mainstreamed, which Mum and Dad pushed for. But, I mean, I think the extent of them treating me, the same as my brother and sister sort of had a profound effect on me to such an extent, is that when I dreamed I was never disabled, when I dreamed I was an All Black winger. And I think that it's reflected in your environment. And, the values that you grow up with.

OS: Side note, do you dream walking or in a wheelchair?

PB: Sometimes both, sometimes I realise I can walk and I get out of my wheelchair and I'm like, this is easy. Why haven't I done this before?

OS: I think I for the most part, I'm like, it's from my eye perspective. So I don't know if I'm disabled, but I definitely have had dreams where like, I can't walk and I'm like, oh, my wheelchair is over there.

PB: I'm so funny, but amazing that Evan was born disabled and still dreams of being an All Black winger. Yeah, I do wonder how much, his parents’  attitude did affect that.

OS: And I do think, like the siblings thing is another important aspect, like how many siblings you have and how involved they're involved in the family and being raised together or, you know, the disabled one is the special odd one out.

PB: Whether you're treated differently, the same. Yeah, yeah. That is so interesting. I think that's such a like, must be such a tricky thing for parents to navigate is to acknowledge the difference without making it define like everything about how they're treated or their role in the family. Like you don't want to completely pretend that they're not disabled and never talk about it. Or like, accept that there are some differences in some things this child can't do.

OS: And you don't want them, the other siblings, to resent the disabled sibling because they're getting more attention. And yeah.

PB: Yeah, but it's a tricky balance of like acknowledging it in like a neutral way and accepting that they're different without, I guess, placing like big differences in expectations on them or differences in the way they're treated. Yeah. Let's see what Emelie has to say about her parents’ relationships with her disabilities and how that shaped who she became.

Emelie: I'd say for me, like growing up undiagnosed with Ehlers-Danlos syndrome meant that my parents’ relationship with my disability was shaped more by maybe confusion than understanding. And I don't want to single any one of my parents out. So I'm just going to speak more generally about some of the dynamics that went on. And I don't want to cast blame on anyone either, because more than anything, I hope that with understanding, people can just help to like, lift each other up and help young people and kids feel as good as possible about themselves. EDS is genetic, so it's more than likely that one of my parents has it too. There weren’t a whole lot of signs when I was younger. Otherwise I think they would have sought help sooner. I think they genuinely wanted me to have like a good childhood. But that desire for like normality meant that when I did struggle with something, they saw it as something to overcome rather than something that might need support or long term management. It's taken me years to unlearn that. No matter how hard I try or how much I try to change myself, that I'm never going to overcome my EDS because it is a part of me. It's something I'm still learning and trying to show people that you can live just as valuable a life as anyone else, while navigating the low moments and embracing the high moments. And that's what makes for like a full, rich life.

PB: Yeah, absolutely. And so interesting. It's almost more similar to my experience that not that she became disabled later in life, but that she got her diagnosis later in life, and her parents went through the whole process of the confusion and figuring out what it was that was causing the symptoms and experiences that she was having. Must have, yeah, been extra difficult, like because you're adjusting together, whereas I guess if you're born disabled, the parents probably do a lot of the adjusting before you're even old enough to, like, be aware of anything going on.

PB: By the time you're aware of yourself, they've already processed it. Probably.

OS: Yeah. And I can really appreciate where Emelie’s parents are coming from in terms of like, overcoming the disability or chronic illness, to cure it in a way, because like parents, they just want their kids to live the best life and. Yeah, yeah. And you know how they're informed about disabilities, what we see in society. And so like, the more that we progress positive representation of disability, parents will also absorb that as well.

PB: So yeah, that's a huge narrative. And society is overcoming disability, not letting it define you. And it sort of leads to like a lack of acceptance that I feel like Emelie was sort of touching on there. And I do sometimes see in my own parents as well, like, it's not whether Pieta can do something with the rest of the family or not.

PB: It's how we're going to make it work, which is great because you know, I really love they work so hard to make sure they can try to adapt activities to me as best I can, but sometimes it leads to me pushing myself a bit too hard to keep up where like probably realistically it should be like maybe I set out on some activities or we do something different instead because trying to like go on these huge mountain bike rides with my little clip on, chair like clip on bike to my chair is not good for my chair or me.

OS: Or you!

PB: Yeah, getting jolted up my back because we're doing these full on mountain bike trails. It's like, all right, maybe it's time to accept that I do have a disability. And I can't overcome in every circumstance. But yeah, a really tricky, again, balance between adapting and accepting at the same time. So yeah. Interesting. Three different experiences there, plus our own.

PB: The next question we asked a little bit more specific, what is something parents of disabled kids are prone to doing that isn't necessarily helpful to the child? And the example we gave was maybe, parents wrapping the disabled child in cotton wool and protecting them from any risk or danger. Let's see what Amy has to say in answer to that question.

Amy: One thing that my parents did when I was a kid that wasn't necessarily helpful was under the advisement of medical professionals. They didn't acknowledge that I was disabled. Medical professionals told them that if they acknowledged my status as a disabled person, then that would limit my potential and I wouldn't want to do as much or achieve as much. And unfortunately, I feel like instead of making me achieve more, it made me achieve less. Because without that acknowledgment of my disability, I didn't have the support and the care and accommodations that would have helped me achieve better and achieve so much more. Luckily, after a few years, my parents realised how faulty that logic was and they completely ignored the specialists and they helped me find my place as a disabled child and then as a disabled adult. And because of that turnaround and that support, I have achieved so much and I can't, thinking back, I can't believe just how faulty and how harmful that advice from the medical profession was.

PB: That is shocking that her parents were literally just doing what I'd been told by experts like people they trusted. And here we have, like the real life adult who's come out of that saying it was not helpful at all.

OS: Yeah, but I mean, I don't blame the parents. They listen to the expert who supposedly should know the best way to do things.

PB: But clearly the specialists themselves have been influenced by this idea that we've got to, like, avoid disability and not accept it in order to pretend that we're not disabled and do as much as everyone else does.

OS: Yeah, that harmful medical model of disability.

PB: Yeah. Which is yeah, really disappointing that, her parents had that experience. But luckily they figured out after a few years it wasn't helping anything. Like we talked about this before as well, you've got to acknowledge the disability like, except that there are differences in order to, put in the supports that are needed, while also like encouraging the child to do as much as they can with as much as they want to, to live a full life.

PB: All right. Let's hear from Evan about what he thinks.

Evan: I grow a lot, through my parents allowing me to take risks, not being stupid, but just letting me live life. And, you know, doing kind of normal things, tree climbing and whatever else. But, you know, when I see disabled parents being overprotective of the children, I kind of a little bit saddened because perhaps it doesn't allow that child to grow and develop. And, you know, you grow through taking risks. You grow from failing. And, yeah, it's certainly shaped who I've become. And that would be good to see more parents sort of allowing their, disabled children to take more risk.

PB: Yeah. So, testimony for the example that we gave, which was sort of, I guess a suspicion I had, and what I've seen in other people as well, like maybe disabled adults still living at home when all their siblings have moved out or not doing the same sports and activities.

OS: Yeah. And I don't think it's just down to the parents. It's also just like wider society stuff. Like, for example, disabled people are a bit more cotton-wooled by, you know, their workplace. Yeah, yeah. People in the community, people ask if they need help, you know, or doctors. Yeah, yeah.

PB: Encouraged not to take risks. But I think as children growing up that's how they learn. It's such a huge you know, they're playing and taking risks and learning where the limits are.

OS: And part of that is building resilience. I do think like some disabled people lack a sense of resilience because we haven't had the opportunity to be pushed to those limits and build that, you know, thick skin.

PB: And that's such a loss because, you know, resilience is probably one of the most important traits for getting through any life. Things are going to happen to you, to everyone that are painful and unhelpful. And we need to have that experience growing up as children where bad things happen and you move on and you get over it to learn that we're capable of that. Interesting. Let's see about Emelie.

Emelie: So for me, my parents are quite different, so I'd say I got quite mixed messages from them. I haven't parented a disabled child, which I'm sure comes with its own challenges, but I think people discussing how they can have a unified approach and how to support their child could be like, really beneficial, of course, is the over protection trap, which can cause fear and anxiety and stop you from experiencing different things. I don't think I fell into that so much because of anything that my parents did. I was expected to manage the same things as everyone else at school, uni and work. Some of my family members had a bit of a tendency to downplay things, sometimes probably because of their own discomfort or the way they were raised. So there's very there was very much like a rub some dirt in it and carry on, just get on with it type of an attitude, which I know many people can probably relate to. But that was hard because at times I felt that I was already trying to do things well beyond my capacity. So looking back, I know everyone was doing their best with the knowledge they had, but if they'd had more conversations together about how to support me rather than individually reacting in their own ways, it would have helped me understand myself a lot sooner. Disabled kids need like consistency, not conflicting messages that leave them questioning their own experiences.

PB: That's such an interesting point on, like the importance of having conversations together as a family and coming to sort of a mutual understanding. I guess, of what disability means.

OS: Imagine having one parent who's like you’re disabled, another one's like, no labels.

PB: Yeah, confusing. Confusing for a child, but also like a just appreciate how much, confidence or skills that take takes to self-advocate in that example where people are downplaying something that could be, you know, really painful or difficult for you because of your disability that they just can't understand because they've never had the same experience. And being able to stand up to your family who like, at least in my experience with siblings, are often like the most mean or like straight up to be like, actually, no, this is a big deal to me.

PB: You don't know what it's like because I am the third or four children. And so I've also had that for my older siblings, like, oh, just get over it. At least I didn't have a disability growing up. So it was just the standard stuff. But it's extra difficult to explain a disability that they don't have. And the things that might be a big deal even if they don't look like it.

PB: Interesting. Cool. And the third question we asked our contributors was to share one specific thing that the parents did to help you succeed and live your best disabled life. Let's go. Amy.

Amy: The thing my parents did that helped me succeed and live my best disabled life was they didn't try to limit me or cotton wool me, but rather they supported me in trying out the things that I wanted to do and finding out what worked for me and what didn't. An example of this is when I wanted to go ice skating with friends. I'm very accident prone and they could have told me no, but I went anyway. I fell, I bruised, but I had the best time. And that's kind of like the metaphor that essentially explains my parents’ relationship with my disability right now.

PB: I love that for Amy. Common theme coming up here again that like the most important thing parents can do is just let their children live and take risks and hurt themselves sometimes.

OS: Yeah. And bruising is all about building resilience.

PB: Yeah. Just like literally everyone else does. What does Evan have to say about this?

Evan: When I was 15, my parents encouraged me strongly to get my private driver's license. I wasn't too keen at the time. Maybe a little bit afraid of the whole process, but, I did get a and it gave me so much freedom, just to be able to come and go, more independence and, you know, more importantly, other I able to do other things in life, such as for seeking employment, getting a job, being independent to come and go with it. And so that just made an amazing effect on my life, as well as being able to do the other things I loved and being able to come and go and, hang out with friends.

PB: Oh my gosh. Yeah. Driving changed my life completely after my accident when I got my, license again, just the freedom of being able to go wherever I wanted, whenever I wanted. Because before that I was on ACC taxis and it was such a pain.

OS: Yeah.

PB: So glad that Evan's parents encouraged him to get that at a young age, just like I'm sure his siblings probably did. And everyone else.

OS: Yeah, they all got their licenses, I'm sure.

PB: Yeah. Then there's no reason that it should be any different when you're disabled. It just takes a little bit more organisation and effort sometimes.

OS: Yep, a few adaptions here and there, but.

PB: So important, like having your own transport is absolutely life changing. What did we get from Emelie?

Emelie: So I think it's about understanding what's within someone's control, what isn't, and adapting accordingly. It's knowing when to encourage, when to validate, and when to step back and help find workarounds instead of forcing something that's not possible or letting them decide for themselves. I think that's like the difference between encouragement and pressure. Motivation is great when there's an achievable goal, but when something is impossible, forcing it doesn't make a child stronger. It just makes you feel under pressure. The best thing that my parents did was give me the space to figure out what works for me without judgment. And, I think that kind of support can make all the difference. I think it's really important to say as well, that parents can't know this information off the bat. The way that you're able to learn these things is by listening to your child and listening to their experiences.

PB: Such good parenting advice from Emelie.

OS: Yeah, I feel like we have to give a lot more grace to our parents as well. Not blame them for our entire childhood trauma. Haha.

PB: No. And totally like I think there's such a lack of any. Well, obviously I haven't done this myself, but where do parents go to get advice on raising disabled childen? Yeah, how to have the conversations and what to tell them and how to treat them. And I don't know that there's much support available, many resources. You know, there's no manual to raising a child full stop.

PB: But, I think a lot of parents who aren't disabled and raising disabled children probably feel very in the dark about how to explain things.

OS: Yeah. Do you think what do you think has helped your parents the most in terms of adapting to having a child with a disability?

PB: Well, I talked to my mum about this this morning, actually, and similar to what the advice Emelie gave, she was like, we just followed your lead, and you were very clear from the start that you weren't broken and you didn't want to be fixed. So we were just like, okay. Like, I guess that's going to be our attitude now, too.

PB: I was lucky I was old enough to be able to decide that and

OS: Yeah, yeah.

PB: And communicate that effectively.

OS: I think for me, like it was just my parents encouraging me, even though at the time maybe it felt like pushing me too far, but just getting involved in lots of stuff and particularly around like disability stuff. So seeing other people in disability communities, seeing adults older than me doing cool stuff. Like Evan, he was one of the first people I saw growing up who was a disabled person, driving a car into seeing his adaptions and being, like, reassured as a 11 year old.

OS: Oh yeah, I'll be able to drive one day because I can see someone else do it. And I think that helped me kind of like overcome some of that internalised ableism from a young age. So I did come into being an adult, like driving and going to uni was like a given because it wasn't limited by kind of, you know, views that would limit me doing that.

PB: Yeah, that's such a good point. And it's so important to have role models and representation and see people are a bit older than you, especially like living full lives with a similar disability or. Yeah, it gives you a better idea of what you can, what you could be capable of as well. Yeah. So what's one specific thing your parents did to help you succeed and live your best disabled life?

OS: Well, I think yeah, I've just answered that. Really. I think I mean, another thing is just like loving your child for who they are and where they're at, you know, whether they're disabled or not. I had no doubt about being loved. And my identity as a, as a woman, as a disabled person because of, like, the way my parents loved me.

OS: And I think that's just a foundational thing.

PB: Totally that so, you know, that's all it comes down to at the end of the day, is making sure your child knows they're loved exactly as they are, not only if they can do certain things or if they get better or whatever. For me, I think my parents have worked really hard to help me adapt in like a physical way, I guess, like, whether that's adapting the house so that it's more accessible to me and helping me with equipment and bikes and problem solving because it has been so much like problem solving.

PB: To get back to doing the things I used to be able to do, helping me get in and out of my bike, and do all the activities, dad will piggyback me onto the beach so I can go for a swim with the family. And it's just like constant wraparound support without any, like, strings attached. I don't feel like I need to say thank you all the time, or that they're doing me this huge favor.

PB: It's just like they're always there and they want me to be included on whatever they're doing all the time. It just, yeah, makes me feel really comfortable and at ease and knowing that I'm not going to be left behind, which is a wonderful thing.

OS: Yeah. Just having that support and love and knowing your self-worth. Yeah. Your disability. What society thinks about disability.

PB: Yeah, I know they want me there, even if it is a little bit more logistically difficult to be included in the usual things.

OS: Yeah.

PB: It must be difficult raising a disabled kid. Yeah. And neither of us have done that ourselves, but lots of gratitude to our parents. Yeah, both of our parents, I think. I think they did a good job.

OS: Yeah. All right.

PB: Yeah, they’re pretty great. And, very interesting to hear from our contributors as well about the helpful and unhelpful things the parents did and the challenges it sounds like they had, and adapting or knowing who to listen to and what to do.

OS: Yeah.

PB: So thank you again to our contributors for sharing your lived experiences. It's always nice to get a wide range of views on topics like these. And thank you, Olivia, for having this conversation with me. Very interesting and important topics, I think, and good to talk about this out in the mainstream. Hopefully people can learn something from our experiences as disabled children and now disabled adults.

PB: Thank you for listening and we'll be back again with another episode. Excited to sit down and talk to you again about our next touchy subject with, of course, answers from our friends in the community.

OS: Cool thanks, Pieta.