Category: Johannesburg

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Simply put, yes. Rather than focusing on the limitations put in place by the word ‘disability’ one should acknowledge the capabilities of the individual. At the CAAC Conference this week I listened to the heroic stories of people living with disabilities who were determined to lead full lives. From Paralympic swimmers to lecturers to students who were studying at college to ‘help give back’, there was no shortage of people who were achieving in their lives despite their disability.

Listening to the fascinating and awe inspiring stories from all the AAC users, I felt their sense of joy and accomplishment. With the AAC devices they were given a voice, a way to socialise and work within the demands of society. Some of the late teen/early adult speakers were of much interest to me as I could relate to their ages. That, however, was where the similarities ended. For these individuals every day was a challenge, a struggle to prove to the world that they can take part like the rest of us. Having grown up with an epileptic brother who also has other complications and an aunt who is paralysed from her neck down, I am used to watching people fight for independence in a world that insists that they won't cope but to hear of their obstacles is different. Rather than guessing the feeling of anguish, the AAC speakers explained their methods of dealing with their challenges.

One particular speaker's words stood out to me, after having a stroke and getting what is known as 'locked in syndrome' he was now a wheelchair user. His seminar was focused on the stigma attached to phrases that are associated with disabled individuals. I had never considered the negative connotations that phrases such as 'wheelchair bound' have such derogatory connotations but he talk addressed the restive force that is behind that phrase. Interestingly, this gentleman was working with researchers on the development of other AAC devices and was not allowing his disability to define his life. It's people like this that makes me want to go out and help these individuals to raise awareness of a life after their disability.

Although life may be tough and challenging, just because you are disabled does not mean that you are not entitled to a full life!

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As this was my first conference and I am still familiarising myself with Augmentative and Alternative Communication (AAC) and their devices I wasn’t quite sure what to expect from these three days. I was not to be disappointed…

Having recently decided that I wanted to undertake a career in research and the further development of AAC devices, I was over the moon when the opportunity arose for me to attend the conference as a PA for my client, Alan. Eager to learn more about the field that I had begun to lean towards as a future career opportunity, I couldn’t have asked for more from the conference.

Starting at nine am in the morning we would choose the seminars that most interested us during the day and continue this way until around five pm. The range of talks available to attend was wondrous, from professionals to AAC users to parents who had taken up roles within the Centre for Augmentative and Alternative Communication (CAAC) we were given a wide range of knowledge about AAC. By hearing from all the different groups one was able to gain a wide picture about the progress, internationally, on the development of devices for non- speakers or speakers of limited communication abilities. As a conference, the AAC users who gave us inspirational talks using their various communication devices spoilt us.

We listened to their stories of empowerment which illustrated that despite the boundaries put on their physical and communication abilities, these people had chosen to acknowledge the capabilities within their disability. They had overcome the limitations that society had imposed on them and found a way to lead full lives. From swimmers at the Paralympics Games to teens preparing to develop a support group for other disabled children to people who had gone on to gain University degrees and found new ways of improving the world for disabled people. As an able bodied person, I was left awestruck and inspired by these people who had overcome so much and were willing to share their stories and experiences with us.

Most of the professionals gave talks on the current research on going around the world, but one aspect in particular stood out to me. The majority of the professionals had no computer knowledge and didn’t appear to be building links with any ‘teckies’. As an undergraduate computing student myself, I thought this was a great disadvantage to the development of AAC devices. In a project as important and large as this, to bring a voice to everyone around the world, we need to work as a team. Experience from all sectors of the industry is essential to the success of AAC devices and not acknowledging this could be a critical downfall to the future of AAC. Without people to bring their personal experiences together with the technical background of the ‘teckies’ AAC devices will never reach their full potential.

In addition to the divided work pattern, I found that many people were focusing on the development of devices specifically for AAC users. This is the wrong approach, in my opinion, to take. Developing technology and software on mainstream technology that already exists allows for more inclusion into society for the user as they are welcomed as part of the crowd. Many users already feel the pain from society’s obnoxious exclusion due to their disability; they don’t want to stand out anymore with equipment that makes them even more ‘different’.

In a conversation today with a woman with Cerebral Palsy, we discussed how ‘society does not owe anyone anything regardless of their impairments’. This was an intriguing idea as it suggests that in order for us all to work in society we all have to give and take. Therefore shouldn’t users meet the able bodied half way and be allowed the chance to feel more included in society whilst still being allowed a voice in society. By allowing the user to feel included you provide a better chance at their happiness and ensure a greater unity amongst all people within society, regardless of their communication abilities. This point was briefly touched upon in the conclusion of the conference and I think will become a greater point of discussion in the coming future as people realise the limitations and excessive costs of AAC devices. Through the development of AAC software on mainstream technologies it allows more AAC users to gain a voice as that technology is more readily available and affordable thus increasing the chance of a greater unity within society.

Video link to Alan's talk: http://www.youtube.com/watch?v=xlHuDZrkzbg

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As we were preparing to land in Jo’burg I felt this sense of belonging and homecoming; after nearly two decades I stepped foot in the city in which I was born in for the first time. Chilly as the weather was, I was a Cheshire with the lightest of steps. After all this time, I was finally allowed to see where I had taken my first breaths. I was home.

As I was travelling with Alan who had a disability we were rushed through customs, which meant that we missed the queues. Giddy with excitement, I kept looking about in an attempt to feel some connection to this city. After arriving at our hotel, piling more layers on, we decided to head into Sandton. This was the area of Jo’burg that I was actually born in and hadn’t expected to see it so was unable to contain my joy as this plan was confirmed. On route to the mall we passed sights familiar to me from my childhood; townships, African people at robots (traffic lights), shops advertising biltong among other things. It was as if I had returned home.

Sandton is an exclusive area which lead to the Nelson Mandela mall being filled with boutiques and jewellery shops that one could see in most big cities worldwide so didn’t pose much fascination for us. It was so interesting to finally see the mall in which my mother walked in whilst waiting for me to be born, apparently I was stubborn and didn’t want to be born. Although I left this country as a newborn, I have this unexplainable bond with it. Some of the views were quite remarkable but not quite as breath taking as some of the sights I had seen in Scotland.

We caught the Gautrain back to our hotel, basically a little underground and over ground train that went between some of the nearby areas. Having been built for last year’s World Cup it was amazingly clean and the staff very helpful. It was an interesting trip which both illuminated some of Jo’burg’s exclusive and poverty stricken areas showing a country that had a mixture of classes with class ceilings more distinct than the British Government would have allowed. As with so many cities, it often had the exclusive areas bordering with the poorest, but it felt like home and I couldn’t have wished to be anywhere else at that moment.