Name Shannon
Age when entered care 7 years old 
Year of birth 1984 
Hometown Ōtepoti Dunedin 
Time in care 1991 - current 
Type of care facility Foster home; residential homes. 
Ethnicity NZ European
Whānau background Shannon has a younger sister and brother. He doesn’t know his father, but had a stepfather for a while.
Current Shannon has autism, epilepsy and dyspraxia. He is non-speaking and uses a text-to-speech facilitated communication device. Shannon lives alone with support staff who care for him. He has a close relationship with his foster sister who is also his welfare guardian.

“It’s not right for able-bodied people to dictate the lives of people with disabilities” 

In third form I wrote a piece called ‘Life in my own world’:

“People sometimes call me dumb, or they say I am a moron. What they don’t realise is that I am a clever cookie. A clever cookie in a silent world. Silent because I can’t talk or communicate well. Silent because I am on my own in it. But silence isn’t bad, just scary sometimes.”

I’m Shannon. I want people to know that living with Autism is great, and I wouldn’t change a thing. We’re just people who see the world through a different lens. That lens isn’t wrong, and we aren’t less.

I use a Lightwriter to communicate – it’s a text-to-speech device that lets me communicate, though I need a facilitator to help me. I got it when I was 15 years old, and I could finally speak for the first time. I felt free to be me – it was exhilarating to have a voice.

I went into care when I was 7 years old. My mum loves me but she couldn’t take care of me when I was young, so I went into a foster home and then to a farm and residential homes. I liked the foster home at first, but I had no proper way of communicating. Then bad things happened, and I left to go to the farm.

I loved the farm. We would go on trips and feed the animals. I was looked after very well. My foster sister learnt to do facilitated communication and made up new ways to communicate. She taught me how to be okay with feelings. I loved the other staff too.

When I was 15 years old I moved into a residential home. I had good staff and I liked most of my flatmates. I could do facilitated communication with some staff and that was really good.

I was at high school at the time. I did very well there, and some teachers could facilitate with me. I got sixth place for maths in my 6th form year group. I also really like writing and I’m bloody good at it. After high school I studied creative writing at Massey University.

I was assaulted by a flatmate while I was at the residential home but I had been taught to scratch and he couldn’t hurt me. He got taken away. Then I moved to another home where there were fewer people and I liked it better. But then I had to go back to the first house – I didn’t want to but I had to.

When I returned, management had changed. I wasn’t allowed to see my foster sister for a long time, and I wasn’t told why. Staff yelled at me and I was put on hard drugs that made me feel dopy and stupid. They didn’t ask me if I wanted to be on those drugs. Some staff hurt me and I wasn’t happy. They’d speak badly to me, and sometimes grab my shoulders and arms. They’d swear at me and treat me like a moron. This made me feel shit.

My Lightwriter had gone missing, but I could still communicate through a facilitation board. However, management took this off me. Some able-bodied people had decided they didn’t believe in facilitated communication, despite the fact dozens of people had facilitated with me over the years. So all my communication was suddenly gone. I didn’t have a say in any of it. They took my voice away from me.

I wasn’t allowed to go out and do things. I wasn’t able to be free and I couldn’t tell anyone anything.

My foster sister got me out of there and it was the best move ever. I was so happy to live with her. I got to be myself. She did everything for me. I got a new Lightwriter and started doing stuff I liked. I was happy.

I now live in my own house and I love it. I love being independent – I feel in control of my life. I like watching television and reading. I like music too. I have a wonderful singing teacher. I also volunteer at the Fringe Festival in Dunedin. I deliver pamphlets and posters, and I do a great job. It’s my favourite thing.

I love making choices for myself. But I want to make more. I still struggle sometimes because my support staff can’t do facilitated communication and need my foster sister to help me tell them things. But it’s still better than living in a home.

I recently got a new Lightwriter – they cost $8,000 and I had lots of trouble getting the funding for a new one. There is also no funding for specialised computer equipment, which I need so I can go back to university.

My foster sister has given me the best life I've had yet, but it's not everything that I should rightfully have. It’s not right for able-bodied people to dictate the lives of people with disabilities – I want to be able to live just like everyone else. I should have a community that fully accepts me, computers I can use, a job that’s paid, lots of able-bodied friends who aren't paid, and my own home designed for my individual needs. I have to pay for a speech and language therapist out of pocket to train my support staff to learn how to communicate with me. This is expensive, and I am unable to do this full time.

People need to stop treating us like idiots and society needs to respect that different ways of being are equal to able-bodied ways. Our homes and lives need to be designed around and for us, because why should we have to fit into able-bodied boxes? Everyone has the right to be different.[2]