Video stories – disability

These videos feature stories about living with a disability and the difference getting support can make.

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Susan

Susan Caldwell, a Department of Conservation ranger on Mana Island, has a hearing loss. She talks about how getting funding for specialised equipment has helped her as a new mum.


Download video: Living with hearing loss (MP4, 26.4MB – Time 4:26)  | 

Susan: My name’s Susan Caldwell and I work as a D.O.C ranger for the Department of Conservation on Mana Island.

There’s a takahe that I think’s on a nest over there and I just want to go and track her and see where she is.

Picking up a signal now over there.

It’s just such a neat career to be involved in really, you know?

Working with endangered species.

There’s myself and my partner Frank and our son Piripi and we live on the island.

I lost my hearing when I was 8 years old to meningitis.

I’ve got no hearing in my right ear and servere hearing loss in my left ear, so I rely on a hearing aid in my left ear.

Since I was 8 until now, I’ve sort of being stumbling along and had various bits of support here and there while I was at school so I just basically was making my own way and doing best with what I had which was, you know, the hearing aid that I received sort in my last year at school and that sort of lasted me for about fifteen years I think.

I think the birth of my son, in terms of my disability quickly realised that being able to hear him and being able to communicate with him I guess as well is fairly important.

This one time where Frank had to go to a meeting and I was in the house with Piripi, he was in the same room as me and I had my hearing aid in, in the night and of course the battery went flat in the middle of the night, and he woke up and started crying and I didn’t hear him and of course having a dead hearing aid in your ear is like an earplug, so I didn’t hear him for quite sometime.

He could’ve been crying there for, you know, an hour or something and I wouldn’t have known and so that was sort of one of the situations where I thought well, there’s got to be some sort of technology out there that can help us.

Like I fully went into the audiologist thinking I was going to have to by my own hearing aids. We were sort of wondering how we were going to budget for a new set of hearing aids. We discussed, you know, my work situation and basically my needs with my family.

And she obviously had access to the networks for funding and disability support that I didn’t have and I wasn’t aware of.

It’s been great to have so much support and so many people interested in you know, making life a bit easier, so its been really fantastic. We’ve got this little thing here.

It’s a little baby monitor. And this is one of the pieces of equipment I’ve been able to get funding for. And we’ve got it so when he’s been crying for 5 seconds or more, it will transmit a signal to my little pager here by the bed and the bed shaker and the little bed shaker thing will go off.

And no matter how deep the sleep is, it wakes you up. That bed shaker goes off for the baby monitor, smoke alarm, telephone and of course the alarm clock as well. That’s all hooked into it.

So we’ve got a telephone here for the island. Once you pick up the call you can adjust the volume and the tone of the call, the callers voice and also it’s got this thing here that cuts out background noise.

So that’s another extra thing which I didn’t have before, that makes life a little bit easier.

It’s been good to know that I can get, you know, a lot of financial support for this rather than sort of struggling along and because this of equipment and technology is very expensive.

I’m just really happy, we all are you know, it’s made me and easier person to communicate with.

I just feel really less stressed than I did, you know, sort of six months ago.

Michelle

Michelle Onekawa, who in 2000 did a Bachelor of Arts at Massey University, has cerebral palsy. She talks about being a student, a parent, and getting around.


Download video: Living well in a wheelchair (MP4, 49.3MB – Time 4:56)  | 

Michelle: My name is Michelle Onekawa and I’m going to tell you a bit about myself and my life.

In 2000 I did a Bachelor of Arts at Massey University which took a lot of determination.

I’m the type of person that likes to get away from the mould of being a typical disabled person, in terms of if there’s something that I’ve wanted to do and I know that I can, then I normally do do it.

I’m in the process of finishing a book – an autobiography. Having cerebral palsy can be quite frustrating and for me, writing is a way of getting it out.

It’s been quite cathartic, I’d say.

I love being a mum. This is my daughter Natasha [photo]. She is a part of my life that I was meant to have, even though I was always told that I couldn’t have kids. Obviously, people were wrong.

I’ve been able to look after her because of my family, mostly, and – I think – determination on my part.

NASC is a body that is able to help people with disabilities. Without them, I think that I wouldn’t be able to be where I am today.

Interviewer: So what’s changed around you now?

Michelle: I’ve got a ramp and a wet area shower. I’m quite lucky with my chair because it’s a power chair and I’m able to get out and about in it by myself. I’m also able to lie in it without getting on my bed.

Without a caregiver I wouldn’t be able to get up so – they’re pretty important.

I opted to have a Māori service provider. There hasn’t been one ever.

Whakama is just a way of saying Māori who are scared to ask for help and hopefully by help with the [xxx], Māori pupils who have disabilities won’t be afraid to ask for help.

Interviewer: How would you be getting on without that kind of support?

Michelle: I wouldn’t be as independent as I am. I would be in care. I think my disability would just consume me.

There is support out there. If I needed support then I first of all I’d ring CCS or NASC. Life is worth living. I am a strong person because I have a disability but I’ve made sure that my disability never rules my life – it’s just part of [who I am].

Fiona and Grant

Fiona and Grant Shanahan are the adoptive parents of a child with Down’s Syndrome. They talk about getting support when Fiona was ill with a pregnancy.


Download video: Loving Kathlyn: Caring for a disabled child (MP4, 38.5 MB – Time 3:51)  | 

Fiona: Hi, I’m Fiona Shanahan and this is my husband, Grant. We have three children: Patrick is 6, Kathlyn is 14 months and Jimmy is 4 weeks old.

Kathlyn, our middle daughter, has Down syndrome and congenital heart issues, so I guess we are parents of a child with special needs.

Grant: We had a bit of trouble having Patrick. Fiona got hyperemesis so she was in hospital a lot of the pregnancy.

Fiona: I went into kidney and liver failure so I was told it was not advisable to have any more children.

We went into the adoption process to add to our family, to give Patrick a sibling. And we never said that we had to have the perfect child. So, for me, I feel that when Kathlyn’s birth parents picked us, we were meant to be her parents from then on.

Grant: I was very scared about adopting a child with Down syndrome because I had no idea what it meant.

We went around and visited a few families and of them in particular was a couple that had adopted a Down syndrome child. It was great to meet them because they had a very relevant experience.

Fiona: For Kathlyn, she had really quite a few medicine issues. She had lots of heart issues and so she was fed by a nasal-gastric tube, because she couldn’t feed. We were just starting to get back into routine and I found out I was pregnant and – humongous shock, I think. I was really ill and I was vomiting 20 to 30 times a day and all I wanted to do was to care for the children I had and I couldn’t, and so that for me was devastating.

Grant: From the day we found out for sure Fiona was pregnant, there was no way Fiona could look after the children.

Fiona: For us, tossing up between Grant leaving work or us paying someone to do it and not making ends meet. And that’s when the agencies stepped in and said we might be able to help out.

I found it difficult to ask for help. We chose to adopt Kathlyn and she is part of our family and then to turn around and say we need someone to help us out – we need someone to come and give us a hand – this is getting to much – and then getting pregnant and saying we need help for both our children, just so we can carry the third child – I found that really hard.

Grant: I guess to talk to people in the industry is important and to try and find anyone who’s had similar experiences.

Fiona: Ask for help – and it is there. And don’t feel ashamed.

Kathlyn is Kathlyn first. She’s our daughter. She’s part of our family. She’s got some amazing qualities. She can be a madam. She’s very strong willed but she’s also really gentle and compassionate and Kathlyn is who she is. Her Down syndrome and other medical issues is just a part of her, who she is.

It was really hard work to get to this point. We’re really lucky we’ve got three very healthy, happy children. We’re just starting to be a family again, aren’t we?

Grant: We are. It’s really good actually, and she’s certainly her own personality and we love her to bits. There’s no way we would let anyone take her off us.

Fiona: [Laughs] No way.

Stuart and Alan

Alan Jones and Stuart Nicholls are both blind. Alan takes Stuart on outings and helps him learn how to get around – this gives Stuart’s parents a break, and enriches Stuart’s life.


Download video: Finding their own way: Living with visual impairment (MP4, 53.7 MB – Time 5:23)  |  

[Stuart and Alan walk down the street together.]

Alan: Yup, fence on your left there.

You probably can get the echo of that, can you? Can you get the echo of that?

Stuart: Yes.

Alan: It’s got a good echo.

Alan (voice over): It’s about sounds really. An environment where you have hearing and feeling and so forth rather than a visual environment.

Alan: We’re just passing the post office now.

I just want to keep you out wide enough Stuart so you don’t hit those pillars.

That’s the bus stop there, Stuart. That’s the number 18 bus there.

Stuart: We will be talking about me catching buses today.

Alan: That’s right.

Stuart: Catching the plane, I'm from Christchurch Home.

Alan: Well that’s right.

[Alan and Stuart walk past Circa Theatre and up to Te Papa Museum.]

Alan (voice over): When we come to Te Papa I picked up, what we call a shoreline of Circa and I knew we had to walk past that.

And then I knew we had to cut inland. As we were approaching the building I got the echo of it, but I also heard the sliding doors, so it actually guided me pretty well to the sliding doors.

[Alan and Stuart come through the Te Papa foyer.]

Alan: We’re going into the cafe now Stuart.

Oh sorry, Stuart just come to the right a bit mate.

Stuart: So, that’s from that ...

Alan: No, I think we’re right.

Oh yes we are right.

Excuse me, are we in the cafe here?

Shop assistant: No sir, you’re in the shop. Would you like me to...

Alan: Oh! That’s OK, yep.

Shop assistant: Go straight out to the left.

Alan: Oh to the left, I’m with you. I thought we might be in the wrong place. Hey, thank you.

That was a bad start wasn’t it Stuart?

Stuart: It was.

Alan: I led you astray, gosh.

[Stuart and Alan sit in the cafe together.]

Stuart: I’m Stuart Nicholls. Alan Jones is next to me. And I’m going out with him fortnightly on the weekend, to concerts and meals out.

[Stuart and Alan walk through the museum.]

Alan (voice over): Although the scheme is principally to give Mr and Mrs Nicholls, give them a break, but I also feel it’s really important for Stuart to be enriched. For an experience that Stuart will enjoy and a concert that he’ll enjoy. So I try and pick something that’s a bit meaningful. It’s got to be something that two blind people will get something out of.

[Back in the cafe.]

Interviewer, off-screen: Stuart, what have you found that you can learn from Alan?

Stuart: Alan’s been able to get round by getting buses and getting lost.

Alan: Yes, that's an important thing of what we do sometimes, isn’t it, Stuart?

Stuart: Yes.

[Back outside, Stuart and Alan cross the road.]

Alan: Now we’re coming to the curb. Quite a high curb here Stuart.

Stuart: Quite narrow.

Alan: Good man, yep it is a wee bit narrow.

Alan [voice over]: I think there is an important thing about blind people working with other blind people. There is an understanding of what blindness is about.

[Back in the cafe.]

Alan: And I think there is also an understanding of the limits. Like I can, I’ve got a fair idea of what is safe and what isn’t safe.

As a blind person I think it’s really really important that you know that help is there. And that the NASC and the agencies will provide this help. I think it’s really really important you get in touch with an agency or a person who can give you information, information is the key element I think.

[At Access Radio, with Alan and Stuart talking on air.]

Alan [voice over]: I believe in people living in the community and being able to do as much as they can independently.

[Back at the cafe]

Stuart: Because it’s good that I can get out and meet new people and do things.

Interviewer, off-screen: What difference has it made to Stuart, the Stuart that you knew a couple of years ago?

Alan: Oh just a lot more confident. A tremendous amount more confident.

[Stuart and Alan enter another cafe.]

Alan: Open the door.

[Stuart and Alan sit together in the cafe.]

Alan: So the challenge for Stuart will be to get from the cafe here on Island Bay Parade, to the bus stop which is just in front of the Midway Park hotel.

We’ve caught the bus at this bus stop before, together, but today Stuart’s going to try it on his own.

Stuart: Because I can do it on my own

Interviewer, off-screen: Why do you want to?

Stuart: To be more independent.

[Stuart exits the cafe, walking down the street and to the bus stop.]

Stuart: I have to turn right.

Here comes the bus now.

[Stuart gets on the bus and leaves.]

Graham

Graham has an intellectual disability and lives on his own. One of his passions is gardening. Jeff Cosser is his community support worker.


Download video: Proud to be independent: Living with an intellectual disability (MPG, 39.5 MB – Time 3:55)  | 

Graham: I used to live in a boarding school called Hohepa Home School. I lived there in about ’92.

[Graham stands at the front door of his home.] I lived on my own for about fifteen or twenty years. It gives me a lot more freedom, I can go to bed when I want, have my meal when I want. [Graham working in the garden.] Do what I want.

Life is like a journey, like on a boat. Yeah it does get stuck sometimes, got to keep going forward. In the past I feel my life had come to a dead-end, I was not really going forward.

[Graham in the lounge, getting ready to go out.] I was always frustrated because I was not getting things done in my life, I need help with some things, I was not very happy.

So I went to N.A.S.C and said well, ‘I need to be part of some organisation where I can get more support.’

And N.A.S.C is a place where, it’s government funded. It’s run on their own, but with the support of the government and their job is to get people included in their life and to get people into residential care or what sort of care they actually need.

It has actually helped me quite a lot ’cause Jeff comes to support me a couple of times a week.

Jeff: Hi, I’m Jeff Cosser, I’m a community support worker and my role is to support guys like Graham with a disability.

[Jeff and Graham talking in the lounge, while Jeff takes notes.]

Jeff [voice over]: My role I see it to support them with things that they want to do in their lives.

Graham: Well we could put, heading could be like, grown pulses ... once. That’s good to have there.

[Graham and Jeff sitting together outside.]

Interviewer, off-screen: What’s it meant in your life having Jeff around?

Graham: Well, it gives me someone to talk to [Jeff drives Graham in the car, while they chat] something to look forward to, gives me help with things I can't quite do on my own.

[Graham and Jeff at the garden centre, getting a trolley out and selecting plants.]

I just cannot go out and buy a wheelbarrow on my own, it’s too big to take home.

My sister has not really got much time to help me, so by having Jeff around I can get a lot done.

[Graham and Jeff sitting outside.]

Graham: We are great friends and we have great discussions, don’t we Jeff?

Jeff: We certainly do.

[Graham planting his new plants.]

Interviewer, off-screen: How do you feel while you’re out in the garden?

Graham: I feel quite relaxed. I feel quite relaxed with things to do. I feel a lot of pride when I do my garden.Yeah, I feel a lot of pride and stuff.

A lot more disabled people are now living in the community and living in their own flats. But they need to be very well supported to do it.

[Graham inside at the computer, talking to Jeff.]

Give them the freedom, give them a sense of growing up. And give them independence from their parents and stuff. Disabled people, if they’re given a chance, they could be capable to do quite a lot.

[Graham paying at the check-out in the garden store.] I feel my life is going on a bit more now than what happened in the past.

Independence actually showed me, like I could do things on my own, how I wanted. Give me my own space in life.

I just feel I’m getting a lot more done in my life with having more support.

[Graham working in the garden.] I’m quite happy with that I think. Looks quite nice I thought.

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