It’s been twenty years since I wrote “Black and Purple Voice”. In that time I’ve advanced from pen and paper to communicate, to the device called a Lightwriter, a mobile phone, and my own form of sign language. I still colour my hair bright colours and have a strong network of friends.
In 2000 I was assaulted; thrown off Flinders Street platform, head first with my wheelchair by a junkie who didn’t like me. I broke my right thigh bone and dislocated my left thumb that the ambulance driver did not re-set; so I’m left with scars on my wrist and hands. I still get hand cramps and have to wear hand splints overnight.
I can now say I’m a more independent person thanks to my mum and Stephanie Schumacher (the second coordinator of Chandos Street, my home), as it was a huge challenge in my recovery to feel safe enough to leave the house after the assault.
Writing on my Lightwriter is very taxing on my energy as I’m moving my hands across the keyboard and trying to breathe looking down at the screen. When I first meet new people it appears like I’m shy and looking down, but I’m just writing on my Lightwriter.
I’m looking into a new form of communication using my eyes to communicate. I’m not exactly sure how it works. If I feel tired and can’t be bothered to type I let the other person ramble on. Hopefully the new device will help solve the fatigue issue, but unfortunately there is not much hope for the rambling.
While I spent seven months bed-ridden, mending my broken leg, I lost a lot of skills, like driving my wheelchair safely and communicating faster on my Lightwriter. I was slow but I still notice a difference.
Communication got harder and harder and continues to as I get older. I miss the days when I would choose my own adventure, going into the city without a carer, going to the suburbs to find an obscure record shop, getting lost most days but always finding my way home.
It’s frustrating how slow it is to get one point across using my Lightwriter or signing. I hope my new eye communication device is a lot faster. I hope that an increased ability to communicate gives me back my independence. I hope one day I have the independence to go out without a baby sitter and do whatever I like without thinking “oh no, we better get back before the shift ends.”
It is faster at the moment to communicate via sign language to my carers and friends rather than the Lightwriter. When new staff members come to work with me I use the Lightwriter to overcome the communication barrier, until they learn my form of sign language. Unfortunately a lack of communication can result in situations like my house mate’s toothbrush being used on my teeth. My routine is disrupted and routine is important not only for my physical comfort, but I need to feel safe in my own home.
In conclusion I think this eye communication gadget will take over from the Lightwriter, I still have my phone and my own form of sign language to communicate. I hope my new eye communication gadget will take me into the future and I hope to write part three of “Black and Purple Voice” in the next twenty years.
This piece was read as part of Origins and Superpowers, a public readings event held by Scope and Melbourne Library Service in December 2015. A group of writers with disabilities who had worked with professional writers in the Telescope Workshops read selections from their work across the genres of fiction, memoir, poetry and non fiction.
Telescope is one of the arts programs run by Community Inclusion staff at Scope and it includes workshops, a writing prize, awards and public readings.
Watch the reading of Alan’s piece here: