Hey everyone, I’m Shakti Today I have Olivia with me Today we’re gonna be talking about disability, life, growing up and all of that kinda stuff With me today I have a prompting device I love these, I used to make these all the time growing up What do you call them? It was like, a predictor or something like that? Cause you’d like put, um – Future predictions
– Yeah, future predictions It was like, your crush is gonna kiss you back or something silly like that! We’re gonna try this out, would you like to pick a colour? Um, yellow. Okay. Y – E – L – L – O – W Number Three Okay, lucky number three What are your dreams and future goals? I think I’ve got the same type of future aspirations as most young people my age Like I want a path to where I wanna be in my career, so just keep seeing that grow Hopefully maybe the next few years like work overseas, get some experience maybe somewhere in the UK So what kind of career do you want? So I work in media, and I’ve a got a journalism background I really enjoy that, and wanting to keep being in that industry so that’s probably my main goal at the moment I have Spina bifida, and I was born with it, and it kinda changed over time I used to use crutches, and then I ended up using a wheelchair cause it was like way easier for me What’s your disability and what’s it about and everything? Cause I don’t know much about you. I have Muscular Dystrophy, so that covers a range of neuromuscular conditions which affect your muscles, Usually it involves muscle weakness, so different types of that affect different muscles, different body parts My specific type affects all my muscles and typically with Muscular Dystrophy is that you get weaker over time But my type doesn’t unless I keep excercising and keep up what mobility I have I’ve always found it really weird cause when I was young I had this huge push to like; “Oh you need to use crutches”, and be like, standing up and walking around – I feel like that’s an able bodied person’s perception of me trying to… you know, adapt to them and be normal
– Yes, yeah – Cause I mean all my physio, all my doctors were able bodied, and that’s this whole medical view
– Do you think that’s a thing? Yeah it’s this medical view of health and disability that like you know the best way to be is to be able to walk And that’s what you should aspire to, but actually you can still live a full and happy life using a wheelchair and I wish that was a misconception that the health and medical industry need to change their perceptions on It’s crazy for me because I had to go through that myself and going from crutches to a wheelchair I was like wow I can like, move as fast as everyone now and use my hands, amazing And it really empowered me to like be more mobile When you have a disability another barrier is actually the social perceptions about what you can and can’t achieve What do you mean? – It’s just about getting to know the person, and their character
– Yeah absolutely And I think that’s hard to do because when you got a disability it’s so like I mean physical disability can be quite in your face and it’s really obvious Able bodied kids are gonna be taught from a young age that y’know you should be more careful around disabled people Or the whole, like y’know, missing out on rough and tumble play and stuff like that right like you don’t get that same thing because my friends would be like I’m not gonna hit you cause y’know you’re in a wheelchair – And you’re like hit me
– And I’m like hit me! fricking go for it And yeah that kinda sucks I guess It’s cool to think that y’know with representation like this, I think the more people hear disabled people’s voices and then talking about their individuality and how they’re similar but facing different struggles from able bodied people I think more people will connect and get better at understanding That’s one of the reasons why I wanted to work in media is to help change the conversation and the narrative around people with disabilities cause growing up I never saw like, someone I could relate to on TV or y’know in a TV show or movie Do you ever find that the people that were in media, y’know disabled people, they were often viewed very negatively as well, right? Yeah, they were like the pity character or the token character type of thing Even just like being a person in a wheelchair in a newsroom helps the reporters and news directors, like, have a different perception of disability you know rather than saying something like, “Oh blah blah blah is wheelchair bound” You know, they know me and they know
that I work hard and they know my abilities at work they may say “oh someone is a wheelchair user”, instead those little words make a huge difference Absolutely These days people are all like “Oh like, into diversity”, that’s like a buzzword and people really wanna be seen as diverse but disabilities always like the very bottom of the list everyone wants to, like when you think about it there’s like, International Woman’s Day, and it’s like super celebrated, like let’s get more women in leadership positions which is great, you know there’s like the rainbow parade, and that’s a big celebration and it’s a happy event but like, no-one celebrates disabillity it’s seen as something that people don’t want they want to stay away from, you know, but actually the reality is in New Zealand, nearly 1 in 4 New Zealander’s have a disability so like, why are we ignoring that? I’ve always felt that as well, I’ve always been like, man why are minorities so trendy right now but disabilities aren’t? Like, yeah. And I’m like, waiting for the social change to catch up on that. Is there anything you think could help facilitate that social change? Well I think we need more people with disabilities in leadership positions, and leadership in powerful positions aswell. I think I’ve learnt recently that most of our DPO’s in New Zealand are run by able bodied people which is fine, you’re allowed to, but it’s not a great representation of the people that they are serving I think There’s this expectation for disabled people to strive for above and beyond to validate their disability And I think that we want to see disabled people in these leadership positions but we also disabled people to get burnt out trying to like, reach for these expectations and goals that other people have set on them I know some people with Muscular Dystrophy, like fatigue is actually a thing Like, they do get more tired then normal and they’ve got to make considerations in their day to make sure they don’t burn out but yeah I think there are expectations cause one of the images we see of people with disabilities in media is that they’re super inspirational and look what they achieve, you know that’s a big selling point for things like the Paralympics, which is great that we have the Paralympics, but the way they’re sold is very different to the Olympics Absolutely and that’s like one of the biggest ways that able bodied interact with disabled people or see them Yeah so I think for some people there might be a pressure to feel like they have to go above and beyond because that’s what is expected to stand out and be included – Is it my turn to do another question?
– Oh man you’re so excited, dude I love these! Fortune tellers, that’s what we used to call these. Fortune tellers. Okay. Pick a colour Ahhhhh blue B – L – U – E One Okay, how do you feel about yourself and your disability as a kid? You grew up with Spina bifida, right? Yes. I always faced like different mobility challenges, different expectations I think I got a lot of that, um, hype when I was I a kid You know when you’re a disabled kid and people are like “Wow you’re so amazing you can do all this stuff” It was a really tough transition for me to realise that ‘Hey guy, you’re just a normal person’ You’re like an everyday person you’re not exceptional because of your disability Yeah so I was also born with my condition and I think what makes my situation a bit unique is that like My brother and my dad also have Muscular Dystrophy and in my family it’s like very normal to have a disability – Oooh, it’s more people…
– Yeah! It’s just my mum who isn’t disabled so she’s like the one out, no, um, so yeah I think for me like, disability was something that was like fully embraced and celebrated in my family. Yeah I think my parents obviously still found it hard because there is obviously this idea like You know when you have a baby and people are like “Oh, healthy baby girl was born” and it’s like, that’s so celebrated, but just because you got a disability doesn’t mean you have a healthy baby that has the potential to live, like a full happy life. Which I do lead, really That’s so cool, do you have any examples of how you felt more supported by celebrating disability? Well, my parents just got me involved with everything possible, they worked so hard to make sure that I could do lots of other things so I wasn’t missing out So i did disabled sailing, I did horse riding, I did violin lessons, I did Star Jam which is a charity for young people with disabilities to do performance There’s been lots of cool things that I did growing up So I didn’t like, feel too… like I was missing out on stuff. You’re still getting engaged in the community, and society and you’re doing things But then when you do become an adult things do change be cause – What changed for you? Well I think you have to be more independent, like you’re an adult now so you have to like start figuring out the world yourself and figuring out what works for me to be able to drive it wasn’t something Mum and Dad were gonna be like “Oh we’re gonna help you do everything” it was kind of like I still had to have the want to actually start driving and put in the hard work and things like that. And I think the same type of thing with going through Uni, they weren’t able to help me with doing assignments Whether you’ve got a disability or not,
when you become an adult there’s so much more that you’ve got to work for you know, and then getting a job and all that kind of stuff, like People with disabilities want to live in an equal world where there’s the same opportunities but sometimes they do need extra considerations to actually live an inclusive life. To what point do you just accept like ‘Oh, okay, this is how it is, i’ll just get on with life’ I just can’t do this particular thing, versus like what point do you fight? – Do you know what I mean?
– Yeah – And advocate for change
– Could you imagine taking every battle on? I know! You gotta pick your battles or else you’re gonna be like, a real downer all the time And no-one wants to be that type of person But there are lots of ways that I think society still have go in terms of disability access and what they consider is acceptable versus what a person with a disability thinks is acceptable – like for example, going to a concert
– Oh man, yeah I can only go with and sit with one other ‘Carer’ or friend, – in the wheelchair area of a stadium
– Have you done that before? I’ve done that before – Yeah it’s only like yourself and one other friend
– And it’s so weird – Yeah! And so for me
– Everyone’s like mosh pitting behind you and you’re in this little like… “Hi…” But for me, I can never go to a big stadium concert with a group of friends because I can only sit with one other friend or carer, in the wheelchair area you know If there was a way that stadiums could be like “Ok well, this area, a person with a disability can sit with all their friends,” you know, and little things like that I think it’s interesting that accessibility often thinks about the physical mobility issues But it often lacks to think further about the social implications, and that wheelchair people have friends – Surprise!
– We do!
– Crazy, right? And we want to hang out with our friends And it’s not just other people in wheelchairs as well with disabilities Thank you so much for coming in and chatting with me – Good to chat
– Absolutely, I learnt so much Till next time