Experiences of disabled people – case studies

Case study 1 - Lesley

As a wheelchair user I’m restricted when it comes to meeting family and friends in their homes. I have access to public buildings, and friends can come to visit me but I can return very few visits. Why shouldn’t I be able to drop in for a coffee when I want to?

I also feel for young people who use wheelchairs. They cannot leave home and go flatting when and where they like in the way that many of their friends are able to do. It’s a big issue for older people too — they suddenly find that the family home they’ve lived in for years is no longer suitable and they have to move.

I would like to see all homes wheelchair accessible. There are things the Government could do — for a start, all future state houses could be built without doorsteps. But there are also things that architects, designers and builders could do if they thought about it. I’d like to see architectural and design awards for private buildings where accessibility is beautifully and stunningly presented as a feature, and as an essential part of what a home needs.

Case study 2 - Matiu

When I was about one, a hearing specialist told my parents I was Deaf.

My Mum, Roimata, and my Dad, Chris, had always dreamed that their kids would grow up speaking te reo. The specialist told them that if they wanted me to speak te reo, my only chance would be an operation to restore some hearing. Then I could concentrate on spoken language and not have to learn sign.

At that time, my parents didn’t know anyone who was Deaf. What they did know was that they needed to get more information. Eventually they made contact with members of the Deaf community, who told them about Deaf as a culture in itself, and the need for me to be exposed to that culture, and learn the language of that culture.

My parents had to go out and seek that information — and that’s always going to be the case. But as a society, we don’t know much at all about disability issues, and for some reason we don’t seem to like to talk about them.

Case study 3 - Paul

I was just a teenager when I started having mood swings and hearing voices that other people didn’t understand. I lived in a small town, and the gossip spread like wildfire. After a while I didn’t even want to go to the corner dairy because of the way people looked at me and I lost what little confidence I had left. I also ended up losing a lot of years out of my life.

What made a difference for me was being able to work. I moved out of the town where I grew up and got a part-time job. It wasn’t really challenging but I couldn’t seem to get the sort of job I wanted. I ended up going and getting some training and then I got the idea for the business I still run today. My parents helped me out with a loan to get started because the banks didn’t want to know me.

I don’t think its easy for anyone to get a business going. The failure rates are high. But if you’ve got a sound idea, what you really need is the opportunity.

Case study 4 - Marg

Each day I wake up I know I should be thrilled that I can share the breath with my four children and husband. At night I dream that this muddled brain will wake up refreshed, my body pain-free and energy restored.

I knew this life several years ago and dreamed of being amongst New Zealand’s elite equestrians. Then four years ago I took a heavy fall show-jumping and knocked myself out. From that day onward I am a different person.

I have had a long and difficult process trying to get help. All I ever asked for was some help to cope with changes and challenges I faced coming to terms with the new me. I’m still waiting and wondering how you work with the system and get well.

If I could get a message to the system, I would say, ‘Please give me your time, concentrate your efforts, just for a bit and complete the paper work, then put in place the recommendations and supports. Then I’ll not have to keep writing, ringing and reminding.’

Case study 5 - Keri

After several years of heart problems, Dad was becoming really forgetful. He started to disappear off for walks without telling anyone, and he couldn’t find his way back home again. We were really worried about him getting hurt.

Everyone in the whānau was either going to school or work so there was no one who could keep an eye on him. The doctor told us that Dad was going to get worse and that maybe we should put him into a rest home. We went to see some but when we got there Dad became upset. The people there were nice but it was nothing like home — it didn’t have the same feel. There also didn’t seem to be any other Māori living or working there.

My husband and I agreed that I should give up work. It’s hard to make ends meet but we just couldn’t do without him. He has given so much to this whānau.

Case study 6 - Sione

They [professionals] seemed to know what they were doing and we just kind of got carried along with that. When I think back, I don’t think any of them told us what other options we had. My aunties gave us heaps and said we should remember who we are more. Now we need to tell the social worker that we don’t want the twins to go to the child care lady and we’re not sure how to do it.

The best thing for all of us would be if someone would pay one of my aunties to look after the kids.

Case study 7 - Sandie

After having my baby and returning to the ward, people reacted to me really differently. Some people were very supportive. Others assumed that I was just a visitor from another ward or were amazed that I had actually been able to have my own baby. Some mothers I talked to even overheard comments like, ‘I think it’s disgusting, letting them have babies.’

Once I got home with my baby people would gaze into the pram and show surprise that my baby was ‘normal’. I was inundated with the standard ‘Oh, however do you manage?’, I got used to it and replied, ‘Just like any mother ... except I wheel instead of walk between chores.’

Personally I would recommend motherhood and I have no qualms about encouraging others to give it a go if it is what they want. Our disabilities are a fact of life and unless there's a health risk they must not be the deciding factor in our decision-making.

Case study 8 - Anne

One April morning, after eight months of assessment, observations and countless appointments we were told that our physically perfect, attractive four-year-old daughter was ‘handicapped’; she was diagnosed as having autism and intellectual disability. The grief was almost all consuming and our lives changed forever.

Our daughter’s inability to understand people and language caused her constant stress. She coped by organising her life into structured routines that only she knew. She is now nineteen and a valued member of our family. With a lot of energy from us and professional behaviour support, our daughter now has an acceptable communication method — we all write everything.

We still feel tremendous grief, but now it is for our daughter, not ourselves. Just coping is difficult for our family and for her. This has been compounded by the difficulties of the ‘system’ and an unaccepting community. With each milestone it feels as if we are the first ones to have got there. After years of trying to work with unaware, unco-operative teachers who failed to equip her with skills for adult life, we are faced with the task of supporting our daughter into adulthood. All we hope for is that our daughter be an accepted, valued member of our community who has the opportunity to contribute and participate.