Disability, the Truth

There’s nothing like laughing at yourself and when we asked people to reveal the truth
about disability there was plenty of humour.
But we talked about some of the tough topics as well, today’s programme is the result
of some frank and revealing conversations.
My life’s dull I have no fun at all.
Yeah, fun, depends what you mean by fun really.
I think it’s other people’s ideas, that people think life can’t be as much fun for
people with disabilities in general, they think, you can’t be having much fun.
There is no burden about being disabled, it’s living your life and hey I’ve got to live
it differently, I can’t fall down on the floor and play and roll with my dog or whatever,
but I can sit in my chair and have my nephew’s on my lap and I can hug them and hold them.
I can still be who I am; I just do it sitting down.
All I can say is I’m never ever having a relationship again with someone who can’t
drive, given that I can’t drive – that was a disaster. Honestly, it’s the first
criteria it’s like, “So, do you drive?” and then, “Do you have a car?”
I do love my car, it goes pretty quick…I’m on an even keel with everybody else. I got
checked out the other day, by this guy in the car and I was like, he has no idea that
I’m in a wheelchair, it was weird that that was my first thought.
When you live in Auckland, I happily walk everywhere, Cat and I both walk, walk, walk,
but there are times…
And you’re resentful though, when I’m walking I’m really resentful, I may have
a great arse, I may write songs, I may get fit, I may meditate when I’m walking, you’re
still resentful at the end of the day, it’s like, no, I would like some kind of transportation.
Some nice man to pick you up…
Aye? No!
I’ve looked at some cars I may be able to use, but I need to have a car that I can drive
into, because I’m not strong enough to lift up my chair.
One thing that I think people need to learn is that when I’m getting out of my car,
if I’m at the supermarket or something like that, I don’t need any help, it’s cool
– I got it. This is probably the tenth time I’ve got in and out of my car today and
I know how to do it.
People think that I can’t live independently as a deaf person, that I can’t drive, that
I can’t speak and other things like that, which I actually can do.
Once I loose the ability to drive it’s going to be a lot harder for me, because driving
gets me to where I want to go, it gives me an escape, it gets me to places. So, it has
both affects, it carries me to something I want to do, or it carries me away when I want
to get away.
I want to go out I have to go taxis’, buses, parents, friends, friends are a big one, they
come and pick you up, so a lot of the independence is lost.
When you’ve got a disability it’s hard to get around, but when someone pushes you
it’s like they’re insisting you on doing something without you allowing it, but they’re
taking away your control of what you can do.
I didn’t use to drive, I had my first job about 16 and I was working for CCS at the
time, so there was a lot of other colleagues and friends there with disabilities and it
was all lovely and they use to call me Princess. So I’d get to work and they were like “Oh
Princess is here, hello Princess”, I was like “Hello.” And I thought it was all
my shoes, because I had beautiful shoes back then. And then my girlfriend, I’m still
friends with her ten years on, and I said “Oh that was nice you use to call me Princess
at CCS” and she said “No, no it wasn’t, it was quite an insult” and I said “Oh
I thought I had lovely shoes” and she said “Oh you did have lovely shoes” she said
“But it was because of how you use to be taken care of so much and you had no independence.”
I said “I had independence” she said “No, no you use to get driven to work, then Molly’s
dad would get out the wheelchair, he’d put it together, he’d lift you into it, push
you up the ramp, take you all the way to your desk and come back for you at 5pm, you couldn’t
even self transfer or push up a hill or get your chair together you didn’t know how
it came apart.”
Being independent really means a lot to me, because I want to learn how to do stuff for
myself. I don’t want people to help me, I want to walk the stairs by myself, push
the hills by myself. I want cook, clean, do everything for myself.
I was in the supermarket the other day and this lady came up to me and said, “Wow look
at you, all by yourself and doing your grocery shopping” and I wanted to say to her, “Yes
I am 28.”
We’d go up to the shop and the shopkeeper would go to dad, “What does she want?”
and he’s like, “Well ask her.”
For some reason they always put the organic stuff on the high shelves, I don’t know
why they do that.
One day I was by myself and I didn’t want to ask someone to pass something down, it
was a feminine product. So I went to the next isle and got a broom, and normally I can flick
things down and grab just one. I flicked it and the whole shelf came down and then people
just cracked up laughing but it wasn’t in a nasty way, it was like ‘oh I’m glad
that wasn’t me sitting in a sea of tampons’ so it can bring a laugh to, it can bring a
funny side.
I went to the car and this man came up to me and he goes, “Do you need help?” and
like I’m not being rude or anything, but he actually gave me the baby look, “Do you
need help?” and I’m like, “I would not have come to the grocery store by myself if
I couldn’t load my groceries back into my car.”
Earning my own money, love being able to earn, like, go there everyday and go, “I did this
work, so this money’s mine”. When I go out I notice that people don’t
actually say to me “What do you do?” because that’s the first thing people use to always
ask me and I use to be quite proud to say what I did do in a previous life.
It never came across to me that people would be surprised that I work, because it was always
going to be my end result. I was always going to work, because I didn’t want to live on
a benefit for the rest of my life, or be dependent on my parents. That was just my natural goal,
but the amount of shock I get that I’m genuinely working and I’m ‘shock horror’ responsible
for stuff is just surprising to people.
Because I get asked that question less too, “What do you do” and when I say, “I’m
a teacher” they go “Oh, oh, oh ok.”
How does that work?
If you are particularly in a wheelchair, I don’t know about other impairments, but I know when you are in a wheelchair, if
I stand in court, I’m treated with the same respect that other lawyers will treat each
other, if I’m sitting down, I’m disrespected immediately.
I really want to start being a lawyer. Part time lawyer, then a full time lawyer. Then
a lawyer that’s well know, I want to be a lawyer that everyone knows, not just because
I’m in a wheelchair, because I’ve got a very good brain because I can argue.
I think there’s definitely a misconception out there that employers see the things that
we can’t do and what they don’t realise is that every day we’re having to work stuff
out just to get through life. So our problem solving skills and our ability to adapt to
new things is, you know those skills are really high.
I do try really hard with school work, because I do know that having a smarter brain will
be a lot easier for me than having a stronger body.
Living with a sight impairment has made my life incredible complex and, I think, it’s
been deeply challenging. There are things that have been deeply challenging and yet
having reached this sort of stage of my life, I feel like I’m getting to a point where
I’m really starting to value that richness of experience, deeply and honestly value it.
There’s nothing I want to change, because I don’t want to think about, if I start
thinking about “Why did it happen to me?” and then think about, “What would I change
now?” well it just eats away at you. So I just don’t want to change anything in
my life. If all those assumptions disappeared and people
were more aware and more informed about everything that would be great.
There’s a huge section of society here that I think that would be really well advised
to yeah join forces I guess and work towards change and I don’t think we’re particularly
good at that. If there was one thing I could have I’d
love to have one hand, just one hand on this side.
What would you do with that hand?
I would Curtis Palmer; I would hold a girl’s hand with it.
So I have no selection process, the only thing that happens is that if they fall drunk in
my lap, they’re mine and unfortunately I can’t see what they look like, most people
would be deterred by the red nose and grey skin, nah not a problem for me.
In fact a taxi driver just asked me the other day, “Do blind people marry other blind
people, or do they marry sighted people?” and I said to him, “Well they only marry
sighted people if they’re really desperate.”
I do remember when I started dating my current girlfriend, I’d told some people at work
and unbeknownst to me that behind the scenes, that the question of the week was whether
or not Red’s girlfriend was also in a wheelchair, which I found quite amusing really because
I didn’t even see it as a…I’m like…people are interested in this stuff?
I definitely use to have more attention before I was getting around in a wheelchair.
I definitely feel that I have to take a hell of a lot longer to get to know someone or
to fully be myself around a girl or whoever that you meet, just based on the fact of,
you don’t want to scare them off to soon type thing, you want them to actually get
to know you as a person before you go ahead and I whip my legs off.
The whole thing about catching, apparently people do this thing where they catch each
other’s eye across the bar, well hello. So then people say, the other thing people
say to me is that I’m a snob and aloof because obviously I’m not getting anybody’s eye,
or we are getting somebody’s eye and we have no idea, we think we’re just looking
into the lovely distance, the next thing you’ve got this guy who’s said, “You’ve been
looking at me all night long.”
To me, I think, first comes love.
I’m like any other teenager, I’ve thought about it.
Then comes commitment.
Relationships, I’ve had probably three.
Then comes marriage.
I don’t have a girlfriend, wish I did though.
Communication is really important in any relationship. So if he wasn’t able to sign I wouldn’t
give him a second look.
You tend to focus a lot more on yourself because the first thing you have to do when you’ve
got a disability is organise yourself. So it’s very much focused around your needs
and partner’s that aren’t disabled find that quite difficult to deal with.
I think also that communication’s really important, like, if I wasn’t able to sign
with any depth then the relationship wouldn’t work. I mean I’d never win any arguments.
In New Zealand we’ve got a very limited concept of what it is to be
a man, to be masculine and I think being in a wheelchair certainly doesn’t fit that
very narrow prescription.
I don’t have a problem with masculinity, for me I think it was more of an image thing,
I’m not afraid to admit that I’m vain and that’s regardless of me being in a chair
or not, so being in a chair did add a little bit of pressure.
I remember actually going through my wardrobe just after I’d moved into a flat, and then
I was about to move home so I was doing a big clear out of my wardrobe. And my sister
was helping me and saying “Oh you won’t need this and you won’t..” she was finding
all my nice underwear “Oh you won’t need these anymore, you won’t need these” and
also dresses and things like that, “You won’t need this, you won’t need that.”
And so they’re leaving me the cotton briefs and that was about it.
I just sort of dress the way I like to dress and I sort of make a conscious effort in not
looking like I’ve just escaped from the institution.
We don’t actually register any looks of either approval or disapproval, so we’re
kind of like the bizarre sociological experiment of what would you wear if you didn’t know
whether or not it looked good or bad, you’ve got to trust your own taste, you’ve got
to actually just move with your own…
Of what feels good.
Once you learn to love yourself everything else falls into place.
Disability and sex, oh, how does that work?
Do they do that?
The notion that I would possibly have sex is some of the dialogue that I’ve had with
my friends, its like “You do that? Really?” When I had my accident, it was really weird,
it was like all of a sudden it was like “Oh my God” and I remember saying to the specialist
or he was kind of like just the registrar at the hospital, and he came into the room
and I just said, “Am I still going to be able to have sex, am I still going to be able
to have children?” and he was like, “Oh I’ll have to get back to you” and he like
ran away. I think people don’t think about sexuality
of blind people, it’s like they don’t think that blind people can cook.
We’re just living ordinary lives, we’re just doing what every young guy kind of does.
You’re okay, you’re okay, stinky nappy.
I still would like to have children, I’m aware it’s going to be a lot harder.
I’ve never really thought about kids. I’ve gone off and seen a genealogist to see whether
or not my kids would be born like me, apparently they won’t, apparently I was just a freak
of nature.
When I was pregnant with Molly it was my favourite thing, because I’ve always been a bit shy
about my tummy and the whole muscular dystrophy doesn’t work well with my abs and then I
had this really big belly that was right out here and it was the first time I ever wore
really skin tight dresses because I didn’t have to have rolls because it’s all so stretched
out to here. And I felt really beautiful and really wonderful and I’d always had things
about scars and impairment and being a disabled woman and things like that and something magical
happened where I was carrying this baby, she was really healthy and my body did exactly
what it was suppose to do.
Some people haven’t managed to accept that you are, or realise that you’re still the
same person. So for me, I don’t know about for you Jo but for me, a couple of friends
just, that were really close friends have just completely died away.
I must admit I lost a lot of my friends, but I think though when something like this happens,
you find out that a lot of your friends are only acquaintances.
I accepted early on that I was never going to be part of that “popular click” so
I just found a group of girls who I had other common interests with.
When I was with my deaf friends, because there were other deaf students there, it was easy
to make friends. But sometimes it was difficult making friends with the hearing students.
The relationship with my sister probably suffered quite a bit, she’s six years younger than
me. And a lot of the spot light came on me at a time when she probably needed it and
so that was probably quite tough on her as well.
My relationship with my dad changed because I had always been this really independent
person and he was like, oh now he’s got to do all these things for me and he’s got
to, you know, that I’ve become this and I think they were really worried about the future.
I was walking home from Uni and there was a little girl jumping on the trampoline just
down the road and she saw me and stopped jumping and she was like, “Mum that lady has no
hands” and I was like, “Whoa lady” and waved and kept walking, that’s the first
time I’ve ever been called a lady it was very odd.
Last time I went to the swimming pools, I have to obviously take off my prosthetic limb
to swim. Some parents tell their children, they say, “Get away from her she’s got
a disease, you might catch it” it’s like, “Hey, you can’t catch this”.
CP isn’t in my everyday thinking, I don’t think about the fact I have CP and it’s
only when people are shocked by something or rush over and try and do something that
I realise how far outside the frame it is.
Some people do ask you, “Do you have a disability?” and I just be straight with them, I tell them,
“I’ve got muscular dystrophy” yeah people are generally quite nice about it.
When I go shopping people always stare at me. I don’t really notice anymore, but when
I go shopping with friends that aren’t use to going out with me they really notice it.
All my friends are always noticing people starring and apparently people stare quite
a lot and I’ve never noticed this.
And then there’s like people that totally, totally will actually try and avoid you and
it’s quite obvious as well because they’re like, oh I don’t really know what to say
to this person so I’m just going to like.. And I’ve actually seen people I know, kind
of knew, before my injury and they’ve kind of like seen me, but kind of thought they’ve
got away without knowing that I’ve seen them.
I went into this shop in South Dunedin, just before Christmas a few years ago, and the
lady behind the counter said to me, “Who’s cooking your Christmas meal this year?”
and I said to her, “I’ve got 14 people coming for dinner.”
But it actually made me realise that for other people the combination of those things is
also confusing or interesting, or there’s something about that, that does challenge
people’s ideas of what, again a partially blind woman, will be like and will look like.
You do get those guys that come up behind you and go, “Good on you mate, good on you for
being out” “What, should I be just sitting in my bedroom all day on the internet making
friends you never actually see or something, just chilling out at my house and not being
seen in public type thing.”
We call them “Back slappers.”
It’s just annoying, it’s like I don’t need to be pitied, so don’t freaking pity
me. I can do everything, so why do you need to pity me, you know?
I said at the very beginning there were two things, I could either be pitied or admired,
and I certainly didn’t want to be pitied.
People look at me and they think, “Oh look at that poor little fella” and they say it!
And you get people who say, “I feel really sorry for you” and it’s like, “Well
I’ve lived with being blind all my life and I don’t feel sorry for myself and I
don’t really want you to feel sorry for me either.”
I look back at people that give me that pitying kind of look and I think, “Gosh you’ve
probably got loads of stuff going on in your life that I would feel sorry for you about
if I knew.”
There’s my plane.
I wheeled up to the check in counter and a woman, she just kind of looked at me, and
went “Pete we’ve got a wheelchair here, what are you going to do?” She didn’t
say, “Hello.”
I always say to people, “If you’re going to travel overseas take a disabled person
with you.” Because travelling anywhere is the best thing when you’re disabled, you
get priority.
I do quite a bit of travelling, and coming back into the country and filling in my customs
form, they ask, “You’ve obviously been drinking quite a bit on the plane” or “Do
you need help to get from here to the baggage terminal?” It’s kind of like, “Dude
I’ve just travelled all around Europe by myself, I’m sure I can get to
the car park.”
I need some help here I think.
Hi Jo how are you.
When I went blind I knew that I had to ask for help to gain the skills that I needed
to be independent. So I’ve always viewed asking for help not as an act of dependence
but as a key to my independence.
If you can realise when you need help and ask for it and get it and then you’re going
to be on your way in doing things independently, like I think it’s important to know.
There’s a fear of actually also being a burden and so you become super conscious.
I use to be really ruthlessly independent against asking for any help, it changed when
I had my daughter, when you’ve got a wee baby and you’re trying to do the shopping,
get in and out the car when it’s raining, it became me not asking for help, puts her
in the rain longer.
I always try and take the scary out of being blind because I feel that people are going
to act in my best interest if they’re not acting from a place of fear, so I’ll always
look at making them feel comfortable about my blindness and that’s just who I am.
Having a spinal cord injury, having a disability, has taught me a lot about the world, and made
me realise that I actually have the strength of character that I didn’t realise I had
before.
Disability is just one life experience, for me it’s actually turned me into someone
that I like and I would not swap it for anything else in the world.
At least be prepared to support one another and really engage, and I don’t think we’re
particularly good at that at the moment. I think if I could change one thing it would
just be to stick a piece of dynamite under our collective arses and get things moving,
because we could do a lot more than we are at the moment.
We had a lot of fun making that programme.
It was taken from what was originally a four part series. You can see them all on our website.
The yellow helmet of the New Zealand Fire Service is a badge of honour that I would ideally
like one day to put back on. Whether or not that’s on the cards is down to my rehab
and the strength of will I guess. It was a head on, so the motorcycle then turned to
the right, which then turned me to the right and because the car that was driving had no
front bumper, when I hit the vehicle it tore off the right leg just below the kneecap.
21 New Zealanders have now been chosen as finalists for the 2011 Attitude Awards. To
secure your ticket to the televised black-tie event visit our website attitudepictures.com