Life is for Living 2005: 25 New Zealanders living with disability tell their stories

Anna - Making a plea for disability awareness education

Photo of Anna sitting in front of her computer.

Anna Nelson is 25 and has just completed a Diploma in Business Studies at WINTEC (Waikato Institute of Technology). She is currently looking for work, preferably in the disability support sector. I live in Hamilton with my boyfriend of six years who is a varsity student. I am a very social person and love hanging out with my partner, friends and family. I am always downtown in the city centre looking at shops, or sitting in a café. I am currently on a benefit but it would be really liberating to be able to support myself and my partner, who will also find paid work when he finishes at university.

I have cerebral palsy, which affects my left arm and hand. My left hand has a tendency to attack itself as the fingers constantly rub and dig into one another, causing the skin to break down and often become infected. To prevent the fingers causing any damage I have worn a splint, or some form of protection on my left hand since I was about four, and have gone through many different types, styles and versions. I'd love to find the perfect splint, but I don't know that it's out there. I've been looking for 20 years, and been to many different specialists. I've had the fingernails removed from my thumb and index finger, which is working well to prevent infection. I had a tendon transplant when I was 14, to try and combat the severe spastic diatonic movements; however that was nowhere near as successful as hoped. For almost 10 years now, three or four times a year I have botox injections deep into the muscles in my left arm, to relax them and combat the extreme spasms and this works well.

I do most of the cooking and housekeeping myself, but often have to ask my partner to do the mopping, or open a jar, or chop something. Very occasionally a glass or plate might get broken, if I'm rushing and not taking care. Because of an accident I get some ACC funding so ACC provides equipment, such as my laptop and kitchen and bathroom equipment.

I walk a lot because we don't have a car, but I walk for the exercise as well. My breathing can influence how often I need to rest, but apart from that I'm a walking machine, which is great considering I was NEVER meant to be able to walk. I also enjoy painting sunsets, flowers and silhouettes, using acrylics. I sell my art either to family or on TradeMe.co.nz. However, each piece takes some time to complete and it's hard to find the time - it's definitely a hobby.

When I was young I never thought I'd be able to live away from home. Ten years on from now I hope to be still happy and doing something satisfying and fulfilling. As long as I'm happy and able to be independent then I don't think it will matter that much where or how I'm living.

"I enjoy being independent, doing things for myself and knowing I'm doing them well."

It would be a great achievement if my partner and I could own our own home. For that to happen I would need to get a job with a decent income. Can a disabled person get into a job with a decent income? Are employers willing to give their high-paying jobs to persons with disabilities? Can you earn good incomes working with and for disabled people? I guess I'll find out.

To complete my Diploma in Business Studies I had access to services, such as a reader-writer for tests and exams. I've been considering doing a certificate in social services and/or a diploma in counselling. To do this I would need the same support and possibly a note-taker for the lectures.

It's certainly not easy living with impairment, and there have been times that I've really struggled to get through, with the huge support of my family and friends. These days I have a lot more self-esteem and confidence, but the biggest thing that impacts on my self-esteem is other people's ignorant attitude towards me. When I am out there, getting on with my life to the best of my ability, I come into contact with people who say and do stupid things to me, about me, and in front of me.

Too often I'm mistaken for being intellectually impaired and that hurts. It really makes it difficult, but it is also why I make the effort to get out there and try to do normal things, to show these ignorant people that I'm not actually that different. General community education about disabilities is important, and I don't believe there is enough of this type of education.

"It would be great to think that, in the future, society will change and the ignorance surrounding the way people with impairments are treated will disappear and there will be a whole lot more respect for everyone in society."

I believe simple, impacting, educational TV advertisements would be a good start. It would be great to be involved in a programme for general community awareness of people with disabilities. Not to show that we are different, but to show that we are the same - human. The government, media and community could provide awareness programmes.

My friends, family and boyfriend all treat me like a 'normal' human being and, to be fair, there are a reasonably large number of people in society who treat disabled people as they should be treated, with respect and no discrimination. But there are some people who have no idea how to relate to impaired people, and that is quite sad. It makes me wonder how they even relate to the closer people in their lives, perhaps they are simply socially impaired themselves.

It would be good if service providers made themselves more public so that we know what is out there. Only recently, through the networking that I've been doing, I've found out about a range of services that could have assisted me over the last few years and made a significant difference to my life - if I had known about them. It can be amazingly difficult to find out about available services and service providers.

I have become aware of the Disability Strategy very recently through networking and learning more about the disability support sector. One of the main streams through it is awareness, so why have I only just become aware of it? Get public, I say.

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