As an inevitable client, as a Passionate Human
Client Ambassador speech, Northcott 2013.
Nb: I don't particularly endorse this service, or any other. This is just one (my) experience.
Good morning staff and avid supporters of Northcott,
The time has come to introduce myself to all of you as one of the 2013 Client Ambassadors. Understandably, I’m a bit nervous. Luckily enough, I was able to prepare my speech beforehand and choose my accent, but please, still bear with me.
My name is Georgia Cranko, and I feel both privileged and humbled to have been selected to represent an organisation, such as Northcott in such a prominent way.
As most of you can probably tell, I have right-sided hemiplegic cerebral palsy. This is a result of being impatient to be born, for you see, I shared the womb with my twin sister, Shannon, who, unlike me, wasn’t ready to face the world. In my rush, I hurt my brain. My brain haemorrhaged, causing the messages from my brain to my muscles to get a little confused and scrambled. My brain damage involves oral dyspraxia, which is medical jargon for being unable to physically form the words that are in my head, and thus explains why I am using this stilted voice to communicate.
Although these diagnoses are a major part of my life’s narrative, I can’t help but feel that by merely saying them, I am somehow defining my brain and my body as defective, and in a sense, they are. But as a person, I’m not any more, or less flawed than any of you. I view disability as a part of being human, having the ability to admit weakness, and having enough humility to ask for, and accept help. I don’t necessarily think of myself as particularly burdened, or someone who deserves to be pitied. I am just a regular, boring 22-year-old, who goes to university and does normal things, like craft, catching up with friends, and reading interesting books.
There are all these disability clichés about facing challenges, being inspirational, and “overcoming adversity”. Then there is life. The reality of my life is that every conversation I choose to engage in, is carefully thought-through, and an effort. And every time I go out in public, I have to brace myself to be talked to like I’m not really as intelligent as I am. Every essay I write takes about five-times as long as the last-minute effort that the majority of my classmates put in. These examples are only really a snippet of what living in my body is like. I am not inspirational, I’m just trying to live my life the best way I know how. That is with a good sense of humour, well, a great sense of humour, if you ask me.
In essence, I am like most people, I like to be recognised for my abilities and talents, and not for what I am unable to do. Therefore, I truly appreciate people and organisations that value me as a person. I feel that the staff at Northcott wholeheartedly do that. When I started using Northcott’s services, I had just become a teenager. I was in the thick of the awful combination of peer pressure and social marginalisation, that high school evokes. Northcott’s Teen Recreation program, here in Parramatta, eased the social isolation I felt; I was able to go out without my parents, and do normal things, like go shopping or see a movie. Additionally, the support workers learnt my signed alphabet, enabling me to communicate both freely and comfortably. During these outings with other kids, I was able to analyse my own prejudices about disability, and begin to accept my own limitations. This happened subtly, but undoubtedly the support workers' attitudes toward us encouraged us to be independent in what we were able to do, all of which helped me to come to these important realisations. Often the things that a support worker doesn't do are as important as what they in fact do, because I see their job as facilitating independence for clients, rather than making them even more dependent. I currently have an individualised community-participation funding scheme, and this is managed by Northcott. The scheme allows me to have support workers assist me with my studies, as well as accessing events occurring in my local community.
Over the years, I have developed an admiration for the way in which the people at Northcott 'walk their talk', so to speak. They really strive to, as their mission statement says, build an inclusive society. They've embraced person-centredness and incorporated it into their values. They’ve even trained 'client champions' to be assertive, and show other services that clients should be directing their own care. After all, they absolutely should.
I often wonder if my brain was damaged a fraction of a millimetre more, what my life would look like. Would I be in a wheelchair? Would I still be able to study at Uni? The one thing I know for sure is that my ability to shape my life would be diminished, and my life opportunities would certainly be more limited. What I'm trying to say is, it's so very random. In the blink of an eye, anybody can lose their ability to walk, to talk or even shower and dress themselves. People often think: 'I couldn't cope if I wasn't able to speak,' or 'I don't think I could bear to live if I had to be helped to shower and be in a wheelchair'
But you know what? You can and you do. You accept, adapt, move on, and try to live as happily as you can... I feel Northcott acknowledges this, and sets out to create opportunities, where people's talents and abilities can be optimised, and, as importantly people are assisted with respect and patience. I think the one thing that most people want in their life, is to be heard, and to have some say over what happens in their day.
To be perfectly honest, I didn't really want to be an ambassador, but I wanted to be able to speak for Northcott's values, and be a voice for all those people who are unable to. I also felt it was common sense that someone, who is in the mainstream community every day, should advocate for social inclusiveness. I have much experience in that regard, on numerous levels. Every day I see how the general population likes to separate themselves from the 'world of disability’. I can only guess they do this to protect themselves from their own vulnerabilities and frailties which are integral to being human. So in order to counter it, I have had to develop the communication skills to articulate my experience and try, to some extent, to normalise disability, to incorporate disability into the fabric of community life, without pity or tokenism. I see this as the only way forward. I despise pity, because it suggests my life is less worthwhile than most people's, but unfortunately pity comes with the territory of having a disability. The flip side of pity, as I mentioned, is astonishment, which is less dehumanising, but can lead to lower expectations. So both these portrayals of disability that the media likes to play up, don't help to normalise it.
In my role as ambassador, I will continue to discuss disability as honestly and openly as I can, which hopefully will not only give people a laugh, but also an accurate understanding of why better government funding and flexibility of the services we use are both crucial to enable us to lead decent lives.
I am looking forward to working with all of you.
Thank you so much for listening!