Category: Caring

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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 a big fan of animals, especially the big five, I was ecstatic to find out that I was getting to visit Kruger Park during my stay in South Africa. The four - night experience was not to be forgotten! Upon arrival, I was handed the keys to a massive 11- seater Kombi and wished good luck. Climbing aboard the beast that was to become my transport for the upcoming weekend, I fearfully tried to drive off. Just managing to move forward I was gaining confidence, until we thought we had missed our turn off and would be forced to reverse. Having never driven anything beside my instructor's mini and my little car (Peugeot 207), driving the Kombi was nerve racking enough without the added issue of not being told of the reverse mechanics. In a VW you have to PUSH down and slide the gear stick into 1st gear, rather than pull the stick back like I was used to. A fact that we eventually learnt as night fell when we managed to find our way to the reception of our first chalet. The driving got smoother after that!

It was a lovely weekend with much jovial banter going on between us all. We had some interesting learning experiences with Peter making his first ever fire at aged nineteen! Having a braai (BBQ) for supper each night and making do with the cooking facilities we had in each chalet. It was nice indulging in some of my childhood meats such as boerwors and sipping my favourite wine in it's country of origin - even if the cork did get stuck in the neck of the bottle forcing me to push it right through!

Each day I would take us all on a seven hour drive around Kruger Park, driving the big Kombi. Whilst in the bush we cam upon some exciting scenes: two leopards about fifty yards away from us, many herds of elephants, giraffe, zebra, lions mating again about a fifty yards away from us and lots of monkeys among other animals. We were very fortunate to see the lions and especially the leopards as one can go a decade without seeing one!

Our final adventure within the park was on our way out, about forty km away from the exit and just past the half way point between the exit and the nearest petrol station (gas station) we realised that we had hit the reserve tank. Calling the Kombi's owner to check how far it would take us we were informed that there was a good chance we wouldn't make the exit before running out of petrol. The frightening, adrenaline pumping experience was not one to forget. We made it to the nearest petrol station - just - before starting the seven hour bus ride to the hotel we were to spend the next four nights.

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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.

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Earlier this evening I took Alan - the guy I care for - to visit an old friend of his in Edinburgh. Like Alan, his friend, Shiela also has Cerebral Palsy but her ability to communicate and be active is not quite as limit as Alan. I had met Sheila and her partner before but this visit was different, I saw her in a new role. As a mother. She has an eighteen month old toddler and despite how Sheila has two Personal Assistants she still takes an active parenting role with her youngest child. I watched with awe as she played with him on the floor, changed his diaper and put him to sleep. If you overlooked the slight jutter to her movements, the walker by her chair and the time taken to carry out the activity at hand you would almost forget that Sheila had a physical disability. More and more as I work with people like Sheila and Alan I become more awestruck by their continued ability to strive for a 'normal' life despite their obstacles. They truly do set an example for the rest of us that (you can succeed) if you really want to!

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Well, after a six-hour long drive I find myself on the outskirts of Liverpool, the home to the Beatles among other great musicians. The city’s surrounding areas surprised me. The first part I drove through reminded me of what I imagine is the town that society was trying to forget, the type of area that was largely populated with a variety of fast food places, take-outs and basically junk food companies. With buildings that weren’t quite derelict but looked frail or out-dated none-the-less. Yes, this was a representative of the aspects of society that no one wants to admit exists in their city. I was nervous, we were due to be spending a week here and I could only imagine what the people would be like...

As we approached the house of my client’s girlfriend— where we would be staying this week— the landscape changed. The take-away shops gave way to quaint detached and semi detached houses, many of which had well kept gardens. Birkenhead, from what I saw, was a lovely smaller city on the outskirts of Liverpool. In the quaint little area I saw what Zita—Alan’s girlfriend—had told us about her area. As we had arrived rather late in the day, we left the exploring for the next day and we weren’t to be disappointed.

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Catching the Ferry across to Liverpool the same thought kept running through my head—Liverpool is a less busy and older version of London. With a culture as rich and extravagant the bus tour we joined went onto disclose some of Liverpool’s secrets to our hungry mind. The buildings were primarily old stone buildings with beautiful stonework and stores hidden deep inside with floor to ceiling glass windows enticing passers-by to stop in for a peek. Exploring the history of the Beatles—who had started in Liverpool— and then heading to the little café over looking the River Mersey. So, to conclude, my first impressions of Liverpool was that it was a smaller version of London which boasted more aged buildings and a history almost as wealthy and exciting as the British capitol. It was an area that perfectly supported the common statement not to judge a [place] but it’s [initial appearance].

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Today I was working. Now for many of you that conjures up images of bar staff, office jobs, warden duties and so on. However, what I was doing today was something different. I was helping, or caring, for Alan, a man who has Cerebral Palsy. I have mentioned him in a previous post, You can succeed.

Anyway, today we were going up to Aberdeen where he was partaking in a Boccia competition. Everyone participating at the event was disabled in some way, although some were less noticeable than others. Throughout the duration of the competition several competitors approached me and were engaging me in conversation, a task for some of them was a great challenge. As I watched them make their round around the crowd that was there, chatting away to those they recognised I felt slightly self conscious. I was a new face among a group of people who frequently met in competitions. As some of the competitors stared at me I thought about how society often stares at them and judges them for what they are unable to do. These people are determined, self motivated and totally normal people and it really riles me up when I hear people call them horrid names.

It was an interesting day that was very revealing about the way society works. For all those idiots out there who ridicule others and call these people names they do not deserve, I'd like to see you battle every day the way they do!

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Recently I found out that I have been given a fantastic opportunity to go to South Africa for about two weeks. I will be working with Alan as he is going across to do some talks in some of the primary schools. It should be very interesting. The best part though is that I finally get to see my country of birth, on an expenses paid trip! All I have to do is sort out meals etc whilst I'm there, and I'm rather looking forward to tucking into all my old favourites..

To say the least I am rather excited about the trip, even though it will still be winter there when we visit it'd probably still warmer than Scotland will be.

Oh, July, please hurry up!!

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About three weeks ago I started caring for a forty-year old male who has Cerebral Palsy (CB). Now, there are various levels of CB and he has a medium level in terms of communication, movement and dexterity. Alan, my client, can communicate using a board known as a Bliss Board, which has some common words on it. This makes communication slow, but not impossible. He can walk with the support of someone’s arm or his walker, although patience is required in his speed. Alan is able to use a computer, but again, it is just a slower process. Basically he is able to most of what you and I can do, just at a slower pace.

What I have noticed is his determination in life and his unstoppable quench for new things. Despite his limited mobility, Alan leads a very active life. He has partaken in several Paralympics across the world for his swimming and done rather well, he gives speeches about overcoming challenges within one’s life and keeps busy with all sorts of social activities.

Working with him has taught me that you can succeed if you refuse to let yourself sink into self pity and accept the obscure box that society tries to fit you in. With work and determination, you and succeed.