Acquiring a Voice in Barcelona

During the summer, I went back to my roots. I didn’t go home. I returned to Spain – the same place where some people go on holidays, lose themselves and never to resurface.

The International Society for Augmentative and Alternative Communication, or ISAAC, held a conference in Barcelona in July. The organisation is made up from professionals, therapists, end-users, and families who have communication difficulties. The language which AAC adheres to has got symbols, words/letters and gestures as part of its non-verbal syntax.

Being born with cerebral palsy, I had to learn Bliss Symbols which saw me coming to grasp on 500 symbols when I was eight or nine years old. The symbols were on a board that I pointed to with my finger. Every sentence was a series of symbols that had its own grammar – nouns, verbs, prepositions, conjunctions, etc.

If a word was not on the board, I could join two word meanings together or point out letters of the alphabet. It provided me a springboard for the various communication systems I have used to negotiate my voice in able-bodied society.

As soon as I landed, the conference was in action already with pre-conference seminars. The lecture was done by an Australian centre on cerebral palsy, and they took on the slant on the condition being asymmetrical and that the body lacked coordination and balance. This imbalance is the consequence of that there is a message misinterpretation between the brain and the body.

The majority of AAC users have cerebral palsy, but there are other disabilities also. In spite of having some effects of your life seen under the microscope, it made me start seeing my disability in a different way.

The conference opened with a musical performance. The piece was synthetic guitar with different sounds like beeps, horns and speech done by AAC users. The precision of the music was executed by the players despite their disability. I have given a few similar performances beforehand in order to promote eye controlled technology.

I press a switch under my chin to type what I say on a laptop today, remembering the days when I finger typed as a child. It was before I developed scoliosis from the twisting of my back in secondary school. Secondary school was mainstream where I had very limited access to specialised services.

After speeches from local Catalan government representatives and others, the lecture rooms quickly filled up and emptied like hives. Every talk was 40 minutes and there were seven papers delivered simultaneously. There was a problem with the paper schedule in that the times and titles were not clearly shown.

So the hives buzzed for four days. The talks included the sentence structuring in AAC – different models, surveys examining relationships within families with users, and a couple of user forums. The sentence structuring in AAC also incorporated how much the language of users was dependent in their voice systems in terms of idea formation and expression. Accordingly, Minspeak has taken over from Bliss Symbols today as a symbolic syntax.

In one user forum, the opening question of whether disability was too much for people in their lives generally broke the proverbial ice – but not for me. It was as stark as night. Clearly, I was rediscovering the environment so it was a culture shock.

Eye controlled technology or what is known eye gaze is a recent enough breakthrough and it was the subject of some talks. It has seen a changeover to the communication method from using a switch, and in some instances, from not being able to find an output at all. It is said that eye gaze can be five times faster than pressing on a switch.

However, back at the forum, the other query of whether people felt frustrated, in that talking was more laborious and slower, was asked to which I gave “yes, I generally ignore it”. The lighthearted answer got some laughter, but it got afterthought as well.

Seeing several users using eye gaze and head pointing, where the user aims an infrared beam at a screen board, brought me to perceive other modes of talking. I have carried out testimonies of a variety of systems, but I have not been able to choose one. Between regaining control of my right hand and the big expense in purchasing a computer, I am in no-mans-land.

I was absolutely delighted to see well-renowned GDIL activist and poet Mairead Manton to be my Irish counterpart despite some professional workers. It made you to say to yourself that language constituted community.

ISAAC Barcelona brought me to further realize my own difficulties and to point me in the right direction of finding solutions. Using a switch under my chin has served me well until this stage in my life, albeit I look on it as a security-blanket. I have referred to my chin switch as being mechanical and to the eye gaze as fluent. Seeing people using their own systems brought home the notion to use whatever way possible in your capacity.

Obviously, there was an overwhelming sense of clinical professionalism, but isn’t that where life in these kind of shoes starts out from? I met a load of fellow AAC users from across the world – European, American, Australian, and even a family from Japan!

I asked how many ISAAC conferences they attended – to which five or six was the response. It was actually my first… Pittsburgh 2012 – here I come! (with a bit of money and luck)

Over the years, I have had over 20 Spanish Personal Assistants working for me. They had me visiting them in their own country and I even found myself being loosely engaged in many a Spanish conversation.

ISAAC Barcelona was like a coming home for me with a new voice

Post 1

Post 1

It's been more than a week since I got my new electric chair, and I feel I am embarking into a new chapter of life. I lost hand control twenty years ago and I got it back last week. Up until then, I operated an outmoded chair with a switch under my chin - and that was a long and tedious procedure.

However, the driver who once refered to himself in childhood as Street-Hawk is returned at long last. Yes - gaining control of one of your arms can be compared to an octopus regaining use of its tentacles - or more adequately - a bird finding power in its wings.

They have put me in slow gear. It's for a month's trial to see if I am capable. I have been moving around my flat and my bad garden. I have made it up to my shopping centre twice and went up the bridge to the DART station. I have had pain in my shoulder and wrist initially but it's gradually subsiding.

Over and out
JS