Stuff of a Fulfilling Life
Education for Northcott staff and clients, 2011
You could say that for me to talk about disability advocacy is to talk about my life. So, this talk will be based on my experiences, beliefs and values, which I have compiled into a nice package for you to make of what you will.
I was asked to come today and talk to you about my work in disability advocacy. Yet, disability advocacy is a concept that sits uneasily in my mind, because for me, the line between disability and humanity is so blurred that I feel like advocating for disability rights is the same as standing up for human rights. I never have thought of myself as an advocate, more like a broken record, repeating ‘I am not stupid, I am not deaf, I am just a person.’ over and over, and over again. But this is what it takes to live a decent life and to live in a society which is, on the whole, ignorant of disability.
When you try to explain with honesty and a sense of conviction, you just hope people will eventually stop and listen. I constantly try to stress that people are just people - we all need to be respected and valued, regardless of age, sex, religion, sexual orientation, ability or intellect. This underlying message of everything that I do seems so basic and simple, that I sometimes wonder why I even bother. Yet, I have to remind myself that the complacency I feel from time to time, is due to the fact I have been given the tools and the education to live my life the way I want to. I have managed to accomplish things that I never would be able to – such as getting into university – without the love and support of family and friends.
Although the path I have travelled has not been easy, from an early age, my needs and desires have always taken precedence over my disability. My parents always have provided me with enough support and guidance, so that I never felt ‘disabled’. It is why I strongly believe that person-centred approaches should be common sense. There are always ways to overcome any disability or challenge to enable people to achieve what they want to. After all, isn’t that what everyone wants? To overcome their limitations, to be valued for their abilities, and do things that make them happy? Ideally in western society, we believe it’s a human right to have choice and to be able to contribute to your community to the best of your ability.
I have never been that confident in my ability, but I have been privileged to meet wonderful people, who have allowed my sense of self to flourish. They have also encouraged my natural inclination to want to make a difference to those around me. I think everyone feels the need to advocate for his or her rights to some extent, and having a disability makes it that more pertinent. Even though the topic of disability becomes dull and tiring after countless conversations and discussions, I feel through talking about it, it assists me to be able to get people thinking and see who I am.
This is precisely why I started AAC Voice, an interest group focused on augmentative and alternative communication. We brainstorm to find ways to better integrate different communication methods into mainstream society. My lack of speech has always been my greatest disability, and although my voice is perfectly clear in my head, people often assume that I don’t have anything to express. Person-centred planning is all well and good, but when a person’s ‘voice’ is undermined or dismissed, everything falls by the wayside.
A lot of traditional disability services encourage learnt helplessness and despondence, because they don’t take the time to listen to and respect clients’ wants and needs. AAC Voice’s main objective is to really emphasise the importance of communication, individual choice and personal expression. Our work is based on person-centred principles. We are just getting established, but we presented at the AGOSCI conference earlier this year. AGOSCI is an interstate initiative promoting the rights of people, who use augmentative communication. To present at the conference was a wonderful opportunity, we received great feedback and that was really validating for me, as one would imagine.
Similarly, having platforms such as this one, to share the experience of living with a disability and to really start to challenge the “norm”, are vital in getting person centred approaches established. In my life, I try to normalise disability and ask for the respect that every human being deserves. By doing this, I hope I can change people’s mindsets and make it that little bit easier for people with disabilities to live an ordinary life. I have never found it easy to accept that I am any different to anyone else, or to let my disability have a profound impact on how I conduct my life. This mentality has been one of the main reasons that I have been able to accomplish what I have.
Last August, I received a grant to create a performance piece as part of the 2010 Don’t Dis my Ability’ campaign. For me, art has always been an antidote to the stressors that having a disability brings. It is a way that I can get out of my head, and as clichéd as it sounds, into my heart. I feel it is one of the most powerful ways to change how people perceive me. The performance I ended up devising, Living Within Context, was basically about the tiny triumphs and struggles that punctuate my everyday life, for example, doing up a button on a shirt. I was surprised how many conversations it started, and how effectively it showed people that disability is only one small part of my life.
I believe Living Within Context was the major catalyst for me being asked to be a Don’t Dis my Ability ambassador for this year’s campaign. I was very humbled to be asked to be such a role model in the disability community. When I think about it, I still have a hard time accepting that I deserve such a role, but I guess the fact that I strive to live an ordinary life without too much fuss, is an admirable quality. I feel that if I can help one of the 1.2 million people who were living with a disability to see their situation slightly differently, it is worth being outspoken and forthright on the issue.
I am very fortunate to have such amazingly supportive friends, who are extremely willing to assist me with whatever I want to achieve. However, most people don’t usually have that, having a disability can be very isolating and lonely. Disability services should not only encourage independent thought from clients, but embrace it. I believe giving people with disabilities the support and tools they need to be happy, if not productive, members of society to be common sense. It is only by valuing an individual’s unique characteristics and respecting their goals that people are able to gain confidence within themselves. So they can go out into the wider community, and live fulfilling lives.