* Note: Names of AAC user have been changed for privacy
Abstract ( 103 of 150 words max)
My personal outlook on the role as a carer or support worker for a gentleman with Cerebral Palsy and limited motor skills is that it has been an enriching experience. Since we have been working together, I now view society in a different way and am more aware of its prejudices towards those with disabilities. I believe that my time spent with the gentleman has taught me how better to interact with someone with limited communication helping me to understand their daily struggles whilst, it is hoped, helping him to allow society to interact with him the same they would with anyone else.
Proposal (960 of 1000 words max)
As many students do, once I had settled into university I began looking for a part time job. Shortly, an offer came along that was perfect. A gentleman with Cerebral Palsy was looking for a part time carer to assist him during the week in social activities. My interest in society attracted me to this position but I was not prepared for what I would gain from it. Although initially nervous, I quickly realised that Harry (name changed), despite having different needs to myself, was no different. Having grown up with a intellectually disabled younger brother and a quadriplegic aunt, socialising with people with different needs to myself was something I was used to, however Harry’s needs were different .For the first time I would be socialising with someone who could not communicate in the standard way, something that made me wonder how I would possibly be able to communicate with him. That was when I first came across the world of AAC.
Alternative and Augmentative Communication (AAC) is the term given to any other means of communication besides oral communication. The range of devices is quite vast depending on the individual’s needs. Some of the devices can be rather high-tech but Harry’s main form of communication is a word-board. Despite how low-tech his ‘voice’ is, it gives Harry the freedom and independence he would not have had otherwise. Working as a carer for Harry, I have observed that having a potentially isolating disability does not have to result in being excluded from social interaction. From giving talks around the world, being a three time-Paralympic swimmer, making his own music and assisting research students to develop AAC technologies, Harry is an inspiration to many people, myself included.
When we are out, I have noticed that Harry and I get two main reactions from people. Either, I am looked to as an interpreter as Harry is ignored; or the person – with every good intention – over tries. Having grown-up with being treated differently, Harry often accepts it but I struggle with society’s attitude more. I must confess that at times, when unsure of how best to approach a disabled person without causing offense, I have let them pass in the shadows. Many people have been guilty of this at some point of their lives. Working with Harry has made me realise that the best way to approach someone with a disability is, for the most part, just converse with him or her as you would any other person. Being a carer means that I have the chance to help society see disabled people as they would any other person.
At the CAAC Conference in South Africa last year, an AAC user talked about the stigma attached to disabilities. His discussion on terms like ‘wheelchair bound’ was interesting, as I had never given much thought to them before. The terms often have a negative connotation that isolates the individual rather than embrace the freedom the item gives a user. The same gentleman, for example, told me off for talking too much and not letting him have a word in! Often I am reprimanded for this for but without his AAC device, the gentleman would not have had the opportunity to express his opinion. Therefore should we not call these devices empowering as opposed to restrictive? The conference showed me that AAC users are proud of their ‘voices’ and, regardless of the stigma attached to their disability, they would continue to strive towards becoming more of an integrated part of society.
Many people, upon observing the interaction between Harry and I, assume we have been working together for much longer than we have. The human ability to adjust and adapt has always been an interest to me and being a carer has shown me that when you want to achieve something, you can. I believe that Harry and I are able to hold a conversation with a normal conversational flow, something that I would never have thought possible in our first meeting. Often in life we walk by those who are different without taking the time to stop and listen, I’m not letting my work with Harry be one of them.
After the conference we visited Cape Town, South Africa, I am reminded of a steep path curling its way upwards to the sky at Cape Point. At the top of the hill was a lighthouse overlooking a point in the sea where ‘two oceans met’. Since our arrival in South Africa, we were told that if the day was right the view was amazing. Looking up at this hill we decided that it was too steep to use the wheelchair but how could I deny Harry the right to see something that an able bodied person was allowed to see? Unsure as to whether the walk would be too much for him, we started out on the half a mile walk. The walk was slow, my breathing heavy as I supported Harry. Trudging on, we ignored the people overtaking us. Harry was determined to reach the top and why should he be denied that? Finally, a broadly grinning Harry reached the top. He had climbed his Mt. Everest. The never ending optimistic attitude that he expresses always amazes me and after only a year of working together, I think of Harry as a friend. Whatever title you attach to my position, be it carer, personal assistant or support worker is irrelevant. I have the fantastic chance to work with someone who sees the sun through the rain. To me, this is what it means to be a carer, getting the chance to learn from the person you are working with just as much as you are helping them to lead an independent life.