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Lusi’s Story

I have had the pleasure of knowing Lusi for many years now. She was one of our founding TalkLink clients and when she showed us her latest Touch Compass production we knew it was important for us to share her inspiring story. You can view Lusi’s video here https://www.youtube.com/watch?v=yHOOpHOUmAM .

Lusi has had a passion for performing on stage since her teens and she is still going strong.

This is Lusi’s story:

Means to Communicate

By Lusi Faiva

The ability to communicate effectively wasn’t easy back in the days when a card communication board filled with words, was the only way to speak with people.

I was placed in an institution on doctor’s orders at the age of two. I wasn’t diagnosed with Cerebral Palsy at birth. It was not until they realised I couldn’t sit up normally and even make soundLusi-DanceBox---Mr-&-Mrs-Jones---Touch-Compas4s from my mouth. It was impossible to express how I felt every day. Being isolated from other children made communicating so difficult, so I just listened to people talking to each other using words that I didn’t understand, although it did become a way to learn, as I was just very young.

The treatment of children with disabilities like the treatment of people labelled with “mental illness” were obviously noticeably different back then and I recall the nurses wore white uniforms with old fashioned caps. They were strict, hard, but some were sympathetic towards the children. The beds were lined up in rows; no happy pictures on the ward wall. It sounds like something out of a Charles Dickens novel.

Strangely there were no speech therapists; I assume the institution would have had that kind of a service back then, but I never saw one. Thanks to the Jones’, a special couple who took me under their wing and taught me to read and write; they opened many doors to communication for me. To me, it is a real bonus being able to write words down. They might be teachers but they went out of their way to take us to the beach where we enjoyed the fresh air, instead of being inside the bare walls of that place.

I am grateful to the Jones’ they gave me a voice to speak in my unique way.

Since moving up to Auckland from Wellington years ago, I have had three communication devices over the time I was in primary school and college. The first device I had was called a Canon Communicator, a medium size device that was tied on my wrist with a small paper print out and no speecCanon Communicatorh output. The second was called a RealVoice in a case that was tricky to carry around and with speech that was sometimes hard to understand. The third was a Lightwriter which I had for the longest time: and now I have an iPad.

My access to communication equipment started at CCS when I became a client with CHAT, which was set up back in 1988 and later they became TalkLink in 1991.



TalkLink has been such a great help in my life, with what they have done over the years, and the people who work there are very professional in the service they provide.

The video I am in tells the story about Mr. & Mrs. Jones. It was filmed by Alyx Duncan and Touch Compass Dance Co who I have been performing with from 1997 to 2009. After a break from dance I made this video in April 2014.


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Ann Smaill

Ann Smaill

General Manager, Speech Language Therapist at The Talklink Trust
I am the General Manager of the TalkLink Trust, and also a speech-language therapist. I have been working with people who have complex communication needs for many years.
Ann Smaill

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Permanent link to this article: http://www.talklink.org.nz/index.php/2015/02/10/lusis-story/

1 comment

  1. Susan preston

    Thank you for sharing your story Lucy
    Best wishes your friend Susan Preston Christchurch

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