Hey everyone! I'm Shakti
Today I've got some new friends with me and
We're going to be talking about life, disability, and growing up.
I don't know if you guys remember this from primary school,
We used to make these - these fortune teller things so we're throwing it back!
Old school!
Choose a colour
Green
G - R - E - E - N
Two
Okay! Let's have a look at number two
How do you feel about your kid self? What were you like Sophia, as a child?
- I guess I was a normal kid a 𝘷𝘦𝘳𝘺 normal life, -
I did well at school just well-rounded I didn't really face many challenges,
Just a very standard life
- So I guess that's quite different now to being disabled - Of course
Umm because I didn't really have any challenges
There was a lot of challenges mostly in terms of being excluded from activities
Oh wow
Yeah, within the school and socially but I was very fortunate
that my parents treated me just like any other child same as my brother
Who doesn't have a disability so everything that he did, I did
Whether it was learning to swim riding a horse everything like that.
But I was just really really fortunate that my parents made sure that I could do
anything that any other child could do if I wanted to do it they would they
would make the adaptations or just intervene on my behalf
even skiing and things like that they got me into that right from a really young age.
That's really cool man, let's move on we'll go to the next one, Josh it is your turn okay
- Would you like to pick a.. - Well I'm colourblind so I'll go for the most obvious one that I can see
- I'll choose blue please - Okay, blue - B L U E
- Eight. - Eight.
Alright, lets have a look see here.
Do you see yourself as different?
- to an extent. - yeah?
I'm aware of my differences I'm aware of my limitations.
I don't really let it affect my life too much but I'm aware that I'm different
- Uh-huh - Yeah, definitely
Okay, what about you Sophia? Do you ever feel different?
Yeah, I mean you get reminded that you're different a lot,
From people that aren't in your everyday life,
You know like with my family it's totally normal to them
But you know when I'm at work, or in the community
Then I can notice people staring at me. They just treat you a little bit differently.
Yeah absolutely - I've found a lot that yeah, a lot of like the disability
Is in the eyes of the people that don't know anything about disability quite often
And that's when you feel like you've got something
otherwise I think when I'm around like my friends who know me and stuff
It's just not like a thing that comes up much.
I think it's good, because why should the disability change our relationships with people?
absolutely
- Yeah, I agree - Have you ever had that said to you like a friend?
yeah yeah
I've had a friend who was thinking about applying for a role in the disability sector
and he said I've got no experience of disability and I said,
Mate, one of your best friends has got Spina bifida and has had it his whole life
and you've grown up alongside of and you've helped them through all these challenges and he says:
"yeah...but you know you're not really" And I was like "not really?"
- I am! I I fully have Spina bifida it's not "not really". It's not a scale.
He didn't even realise that, you know? So
Yeah your friends can definitely just - it becomes invisible to them
Yeah, the people around you they learn from you as well and how to help
and I think learning how to help people is so important right?
yeah do you guys find that people without disabilities really struggle
- watching us struggle? Like it's uncomfortable for them. - Woah, that's a really interesting thought
Has that happened to you before? yeah just like even you know if I'm trying to put my
leg back onto my foot plate cause it's spasmed off, people are uncomfortable
watching me try to do that yeah I get curiosity a lot of the time like when I
go to the rear of my car and the wheelchair, people watch me okay he's
gone to the back of the car what's happening there?
- yeah - and I just yeah
I just get out lift the wheelchair up put it in the boot and sometimes I look at them
and if they're staring and I say; "Magic!" And then I put it up and jump back in.
Do they think you're going to fall or something?
what about in summer do you wear shorts in summer? Do you have the skinny legs I've got
the really skinny legs but my - I really I don't I'm so scared of that I don't even
own shorts because I'm scared of my skinny legs and I'm scared that I'm
gonna like freak people out because people like called me out on it before
and I'm like I'm sorry, like I'm sorry I don't have calves
- Mine are the same, mine are like this - Yeah, yea
I'm definitely self-conscious about that, and I'm very careful about like the way I dress and stuff sometimes.
it's so hard to dress that um yeah one
of the girls that I've met through having a spinal cord injury she just
said I'm just gonna bite the bullet and start wearing shorts because you know if I
wait until my legs have atrophied more and they're even skinnier then I'm
gonna be you know struggling to make the transition from wearing pants to shorts even more
- Yeah - That makes sense
So this summer I'm just - I have to wear shorts.
Really?
I'm gonna, I have to and also, - I'm so scared
This is something I need to learn from you guys because like how you do it 'cause I
genuinely wouldn't even know how to start
I think the first thing is fake tan
- Fake tan?! I don't need a fake tan - I do! You dont.
I do, because my legs havent seen the sun in three years.
But they'll tan up quick because it's a small circumference
I'm pretty sure you don't tan as easily where there's like limited blood flow
- so maybe not - that's a good point I hadn't even thought of that actually.
I'm gonna do it, it's your turn again Sophia
- Yeah, I'll pick - Okay
I can see colours
*Everyone laughs*
Green
G-R-E-E-N
Three
Alright
What are your dreams and future goals?
Dreams and goals.
I just want to provide the best life that I can for my family
- yeah - yeah I want my daughter to grow up,
have all the opportunities that I had, and even the activities that I can't do -
I'll get my Dad to teach her how to surf and
my Mum and Dad can take her on the Great Walks in the South Island,
things that I never got to do.
I just want my daughter and my wife to have all the opportunities that I didn't.
Yeah, I definitely agree with what you're saying because
I find it hard to imagine having a family in the future and holding them back from doing things.
like um, like you said like doing family activities like going for walks
or even you know, changing a baby's nappy or doing my daughter's hair
- yeah - for school and stuff like that it's...
it's a bit hard to imagine having to have someone else in the house to do that type stuff
just need to find a partner who understands all that and
just be honest with them right from the beginning because my wife definitely,
definitely without a doubt does most of the work around the baby.
I'm not comfortable carrying the baby walking because the way I walk
it's so dangerous I could fall over any time but if they're understanding around that
then like you said you you help out in other ways, so you make it work.
I think it also comes with being a woman is you know motherhood is what you're naturally
You know, destined to be. Um, and then probably for you as a dad you're a provider
- yes its a bit different - yeah it's different I can understand that yeah
so I'm a boy in a wheelchair, do you think that there are different experiences or struggles that
you've gone through as a woman living with a wheelchair?
yeah I think that people always ask me if I can have children
Wait like people would just very candidly ask you stuff like that?
yeah, yeah like people that I've known for like five minutes be like;
"So can you have children?" and I'm like "I don't know can you have children?"
- That's a good response yeah - Yeah yeah, absolutely
No one's just born just knowing if they can have children or not.
My spinal cord injury hasn't affected my ovaries, so...
I'd like to think I've got the same chances as I would before this injury
Do you have any future aspirations or goals that you're thinking about?
Related to your disability or not?
Um, I think the way my life is heading kind of naturally is maybe to promote inclusivity
- Uh huh - Yeah, it's really hard because obviously growing up
I pictured my life being completely different to what it is now
of course
so what my dreams were then aren't my dreams now and I'm just trying to figure out what my dreams are
- yeah, lets move on to another tangent - Next colour?
Sure
Yeah, alright
- Do you want to choose? - Yellow please.
Y-E-L-L-O-W
- 5 please - 5, let's have a look, did we choose 5?
Do you think society's perceptions of disability has changed?
I do. It's definitely better to be a disabled person in 2019 than it was ten years ago
there's more adaptations in terms of buildings you know ramps and lifts and things like that
but there's also a little bit more awareness and understanding.
I don't feel like I can answer that question because my perception of disability has changed so much.
But I haven't really been able to recognize. But I definitely think that like the improvements with the
voice-activated technology and stuff has already improved so much since when I first had my injury
Yeah, is that technology that you use now?
- Yeah like - - That's really cool!
- Like Google Home and Alexa and you know, stuff like that.
So you know for a normal able-bodied person if they need to use Alexa
to turn on music it's kind of like oh yeah "you're so lazy"
but for you know when you put it into the perspective of a disabled person
- Then it all of a sudden becomes like freakin cool - Yeah, yeah
and so I definitely think that that's exciting for people with disabilities
yeah yeah absolutely
I think, um, a lot of what I've thought about as well is
Um, a lot of people living with disabilities just need that
sort of like adaptation for them to reach that same opportunity level as everyone else
But the fact that like the Alexa is a mainstream device that's you know made for everyone
not just for people with disabilities makes it really cool.
that's really interesting yeah because if you're using
something that's specialised, people are gonna associate that with disability
like like blind readers and stuff like that but if it is in the mainstream
and it's incorporated and everyone uses it it's not weird to use it
- exactly - yeah yeah I get that
'Cause disability equipment carries a stigma
So what do you guys hope for the younger generation of disabled kids coming through?
Like do you expect them to live in a different world? What do you want for them?
I just hope that they don't have to stand up for themselves so many times
Yeah, young school students shouldn't need to argue their case to being
included on school camps they shouldn't need to get their parents to ring up the
school they should just be included in the same way every other child is
and it doesn't need to be if there needs to be something special
changed for them it's just it's just done it's just it's just done out of kindness
as it would be for any other student
yeah
Again I don't have much experience growing up with a disability
but I can, I can see that there needs to be bridges, not barriers
yeah yeah I think a bit like you I think I just hope that accessibility
is just less of an afterthought a lot of the time I feel like if like integration
was more thought from the ground up on everyone's thought about that way.
Sophia what would you tell yourself when you first had your disability if you could
give advice to them now as someone who's grown what would you say?
it's really important to get involved in the community which understands you
because they'll help you make that a progression into the life of
living with a spinal cord injury yeah, I think if you try to do it by yourself it's everything's gonna be harder
you don't know what you don't know so you don't know what's available to you
- You just really need to use all your resources - yeah
thank you so much guys for coming here today and having a chat with me
I think we went through the big issues we covered a lot
- we did thanks for having me Shakti - Awesome
-Thanks for having me - No problem, thanks guys!