June 27^th is the birthday of a lady who made life for people like me, better.  Of course, I am talking about Helen Keller, a person born hearing and seeing until, at the age of two she developed an illness that would cause her to be profoundly deafblind.

Because of this, every year on the week of her birthday, is International Deafblind awareness week and what better time to talk about being a chair user, with a dual disability?

As I said in my last write-up about needing the right support worker, I have multiple disabilities including deafblindness. Having duel sensory loss makes things a bit more complicated when you are also a power chair user, or even in general; because when you lose (or a born with the loss of) one of your senses, your other senses become stronger (put a blindfold on tight for example, and in minutes you will notice your other senses kick in). But imagine not having sight and sound, you become vulnerable because people will (and do) just grab your arm and move you without bothering to alert you that this is about to happen!

Now imagine that, and add in the power chair... I am blessed that I can see a meter in front of me with my left eye (my right eye has a cataract in it from birth), but I have been told I have a cataract forming in my left eye and I am having a to learn to adapt even more as my blindness worsens.

My new chair, thankfully has an attendant control on so when I need to, my Support staff can take over but at the same time, I am training myself to use my white cane while using my chair too.

At the same time being in a chair also provides another obstacle to be overcome, and that is how to communicate to me about the world around me as the normal method for this is not easily accessible to my Staff (normally a communication guide will perform haptics -a method of tactile signals for describing visual/audible information ie where the deafblind person is in relation to their environment, on the deafblind persons back). But thankfully the Deafblind Coordinator at Blind Low Vision NZ is helping to adapt the haptic system to my needs by using other parts of my body ie upper arms.

So to end this article I will end with a quote from the famous Helen Keller herself “A bend in the road is not the end of the road… Unless you fail to make the turn.”

About the author: 

I am a 42-year-old man, who is born and raised in New Zealand. I have PHACES Syndrome which is very rare (there are only around 5 of us in NZ and I am the oldest we know of here), this affects my brain, senses, muscles, nervous system, vascular system, as well as the skeleton and connective tissue.

I have a Certificate in Social Services (Biculturalism), which helps me in my advocacy work, but I would love to work with children with special education needs. I write poetry, short stories and have written a song. I also paint and play a strong part in my Church community. I love knitting and music, anything related to space and cats, and my favourite show is Star Trek.