Life is for Living 2005: 25 New Zealanders living with disability tell their stories
Red - A typical 18-year-old
Red Nicholson is 18 and works full-time at Telecom NZ on the broadband technical support desk. "I am a typical teenage boy, unmotivated and often spending too much time on the computer. I like going out in the weekend. I live with my mother, her partner and three siblings. I have spastic quadriplegia and get around in a power chair. It's not a big a deal for me - it's just part of who I am, but it obviously impacts on my life and the things that I do. I don't let it impact emotionally, or not to the extent that a lot of people think it should."
"Sometimes people are shocked when I tell them that I catch a bus home from town at 1am. Do they think that people with disabilities should be locked away in their bedroom by then? It's up to you to do stuff and not let others dictate what you can and can't do."
I face barriers to the places I can go and how I get there. Transport is a huge barrier. Part of this is an attitude problem - it seems that some service providers don't really want to provide a service but feel they have to, to be politically correct or because the council tells them they have to. I catch a bus to and from work every day. When that doesn't work out I'm in trouble. In fact, last night the midnight bus that I usually catch home from town didn't come so I had to drive myself home in my chair.
To catch a taxi you generally have to book it at least a day in advance so that's impractical. The attitudes of drivers are something I have to deal with - I've found that most bus drivers, and even some cab drivers, have a begrudging attitude and appear as if they don't really want to help. You can't really blame them - they have to put the ramp down for me and that is an inconvenience.
When I go out with friends it's usually to a bar or to the movies. It can be a pain if a bar has stairs. I sometimes feel like a liability when we go out because the places we can go are limited by me. I sometimes say, 'Don't worry guys, I'll go home. You guys can carry on'. That doesn't happen because my friends won't let it. But in an ideal world everywhere would have ramps and it wouldn't be a big deal.
I have a modified van that I bought myself but I'm only on my learner licence. The potential for independence will greatly increase when I have my full licence. Our current house has been adapted to suit my needs. There are no stairs in the house and the bathroom has an open plan shower. It's perfect for me but I'd really like to go flatting. It is difficult to find wheelchair-accessible housing in Auckland.
"For me the best form of education is getting out in the world and experiencing real-world scenarios. Writing essays for three years is OK but you need to get out there and actually engage with people and managers to get a sense of professional standards. I'm really relishing it."
It is a daunting task looking through papers, sifting through web sites and trying to find a place that has accessibility and is close to amenities and my work. Housing NZ is an option but because I am on a full-time salary I don't think I qualify for HNZ funding and I can't manage to live too far from my work.
I wish there were services provided to help people with disabilities move from living with their family into independent living. Perhaps there is a division of some support agency that could provide options of properties that would be suitable for me to rent or buy. If there is, I don't know about it. Services are so poorly promoted yet they are so valuable. The lack of accessible housing, or the advertising of accessible housing, is something that could be addressed.
It would be great if retail companies, accommodation providers, etc advertised services or support they can offer disabled people. They could make it into something attractive they could market. One in five people have a disability of some sort so there would be a market for their services and it would save us having to go to all lengths to look for suitable housing, holiday accommodation, leisure activities, etc.
Maybe in a year or two I might go and do a Bachelor of Communication and learn more about the media. I'm no more disadvantaged than anyone else when it comes to academia. Before working at Telecom I went to Auckland University and did part of an Arts degree. I really enjoyed my studies, and the social life, but it was really expensive. I decided I didn't want to continue until I was sure I was doing something that would be of benefit to me further down the track. I also believe that if you can show an employer that you have the ambition, the personality and the passion for anything, that is more valuable than any university qualification.
"My job is great and I work with some awesome people."
There are some accessibility barriers in my workplace, like lack of disabled toilets on my floor. When we moved into the building it didn't have wheelchair access. CCS assessed it all and worked out the best solution to get me in. Alterations were made within a week. I was really impressed with the way my employer was totally cooperative and had my best interests at heart. I think it would be a different story for some smaller companies with less money as it is a significant cost output.
In the future I would like to get involved with different aspects of the media - journalism, radio, television, film - particularly filming, editing and directing. I also love writing. I'm a really creative, expressive person and, although I really enjoy the work I'm doing, I don't feel as though I'm utilising all my talents in a call centre. Eventually I'll have to decide if I want to remain on the good salary that I am on at the moment, in a job that isn't necessarily me, or really take a plunge and do work that I absolutely love for a pittance.
"My disability doesn't affect my earning capacity and I'm sure it never will, but it does impact on finances - when I bought my van I had to get a loan for it because it was wheelchair-modified with hoist, hand control etc. The previous owner had it modified for $30,000 - for the modifications alone. I bought it for $20,000. I love it and the independence it has given me, but it annoys me that, because I'm in a wheelchair, I had to pay out this kind of money. I can't go and buy a bomb of a car for $500."
Other costs related to my disability are for physiotherapy (yoga, stretching) once a week, home care support services and gym fees. I go to a gym that's modified for people with wheelchair disabilities. I receive home care service - a guy comes in every morning and helps me put my clothes on. I can get out of bed, shower and dry myself but I can't put my clothes on. He comes to the gym with me sometimes as well. It's a really important service that gives me a bit more independence and I'm really pleased with that service.
I have been involved in a couple of charitable trusts in the past. For a couple of years I was on the board of Recreate Auckland, which was set up to provide recreational opportunities for people with disabilities. I have also been involved in StarJam - an organisation that recognises and showcases the talents of kids with disabilities. I've been to America with them to interview Dick van Dyke.
I don't feel the need to belong to disabled clubs but I really enjoy getting involved in StarJam and I've met some amazing kids who have some extraordinary talents. StarJam allows them to showcase these on stage and at big events without being marginalised. It's really cool and brings out the best in people. As a kid I really enjoyed the mini olympics put on by CCS and it really increased my self-confidence.
I value my independence. It's not just a matter of having independence, it's a matter of having the want to be independent. I think a lot of people with disabilities, especially young ones, are wrapped in cotton wool by their parents, and not pushed to be as able as they could be. I'm not talking about being able to walk or put their own shoes and socks on, but catching the bus or going into town by themselves and meeting up with friends - doing the things that everyone else is doing. I have the attitude 'there's no reason why I can't!'
I'm really grateful to my mother for having put the onus on me to do things for myself - to get my licence, to register and warrant the car, study for exams, catch a bus, go to the orthodontist or whatever. When I was younger, if I had to find bus routes and go to a bus stop in an area that I hadn't been in before, well, she expected me to do it. It was a pain at times but I'm really grateful now because it has given me a 'can do' attitude.
My family is really important to me. It is a nice balance between normality and having someone to care about me as well. My siblings are very normal - my brother is 16 and my two sisters are 12 and nine. My 12-year-old sister helps me so much. My whole family is supportive but they certainly haven't made me too reliant on them. I'm reliant on them in the sense that if I can't do certain things myself they will assist, but at the same time they don't treat me differently. In fact, they often take the piss out of me. That's important - I think you've got to be able to laugh at yourself and make light of the situation. If you start taking yourself too seriously then you could become a very depressing kind of person complaining about how hard life is.
My friends are very dear to me. My girlfriend is fantastic. For a long time I thought that being in a wheelchair meant that I wouldn't have a girlfriend, but we've been together almost 11 months now. Of course my disability crops up in every single aspect of our relationship but we just laugh about it. It adds an extra dimension. Again, it's an attitude thing and it's all about the whole package. If she wants to take me on, she has to take my disability on as well. It's great to have someone who you know accepts you and loves you for who you are, and doesn't wish you were somebody else. I think she appreciates that if I could walk I would probably be a very different person.
We have a great time together and she doesn't try to be overly nice. She tells me to stop being lazy when I ask her to pick things up for me. The only time my disability comes into it is when we are laughing about it.
"I take what I've got with both hands and do what I can with it. There is no point in whingeing about what you haven't got - it ain't coming back."
There are certainly aspects about me that I often wish were different. Who wants to be in a wheelchair? Who would choose that life? This doesn't mean I pine and whinge and moan about them, but the fact that I've got cerebral palsy does mean that my hands appear spastic almost. Sometimes I have difficulty saying things but those times are few and far between.
You have to make the most of what you've got. I think the last few years have been huge for me. High school was the worst time for me as everyone was so image conscious. After that it's quite an eye-opener when you find people who like you for who you are, and my self-confidence has shot up since school. My approach is 'turn what you have into something positive that people can feel relaxed about'.
When I think about how society relates to disabled people the word 'naivety' comes into my mind. Some people have a warped concept about how people with disabilities see themselves. I struggle to find one single person with a disability who wouldn't mind telling someone why they are in a wheelchair, yet some people think it is insensitive or rude to ask questions about it. Some stare, are not sure what to say, or ask awkward questions. Some people link physical disability with mental disability without really thinking twice about it. I don't think people are hostile, just ignorant or uneducated.
"I think 'disability awareness' is such a cliché - it is more than just making sure places have ramps. It's about educating and informing people about different types of disability and what they can do to not make people with disabilities feel so alienated."
In 10 years time, I could see myself in a whole bunch of places, making movies, on TV, still working at Telecom, travelling, public speaking, working in the disability sector - any number of places. At the moment I'm really pleased that I've got a whole raft of things that I could do with my life. It's a matter of making good choices.
When I see those 'Know me before you judge me' TV advertisements about mental illness I wish there were a few ads like that about cerebral palsy, muscular dystrophy or spina bifida. Sometimes you feel that you don't really belong in certain places. I'd love to run classes to inform people what it's all about and how you can make a person with a disability feel 'normal'.
I'm aware of the Disability Strategy and I've seen some changes for the better in access issues in the last two to three years. Three years ago I couldn't catch buses from my place to town because they all had stairs. Now all buses that go from my place to town have ramps. I think a lot of places are becoming more accessible for disabled people. People are looking at ways to get people with disabilities out into the community, to shops or movies or whatever. We have a piece of documentation now that says 'this is what we want' and it has encouraged owners of places to be more aware of the needs of people with disabilities.