I have had a pretty successful year as an advocate. I have been doing it for a long time so I have got pretty good at it, even if I do say so myself. But it is interesting that most of my advocacy success happens simply because I need access for me.
Like today. I am fortunate to be attending a conference in Brisbane focusing on Autism. It is a fascinating conference and I am absorbing information like a sponge. For a while it looked like I would not be able to attend.There were no interpreters booked or captioning. The organisers thought that a hearing loop would be suffice. I lobbied to them, with the help of some friends, to get them to provide communication access. Eventually they relented and decided to organise the access.
My reasons for wanting the interpreting and captioning were purely selfish. I wanted to be part of the conference so I lobbied the organisers to get what I wanted. But by getting what I wanted other people benefited, and not just other people who are deaf. For example, did you know that people with autism can actually benefit from captioning?
People with Autism typically exhibit what is known monotropism. Put simply this is the inability to focus on multiple tasks. Monotrpoism can actually be an advantage, particularly with tasks that require intense focus. One of the problems with autism is that many people who have it find it difficult to focus on more than one thing at a time.
Apparently captions can assist people with autism to get a better understanding of what is being said. If the captions provide plenty of descriptions for emotions that are being exhibited and descriptions of sounds, they can actually provide a better understanding for many people with autism than just audio itself.
This is because the people with autism can be really distracted by what is known as white noise. White noise might simply be coughing, pens tapping, papers rattling and so on. Apparently a person with autism studying at university wears headphones in his exams to cut out any background noise that is a distraction. In this way it helps him to focus on his exam.
I am told that people with autism are actually the second biggest market for captioning after people who are deaf. It is kind of comforting knowing that my purely selfish lobbying for things like captioning can benefit other people as well. Let’s be honest, I am no saint. I don’t do things simply because I want to help others. Sure, that is part of my motivation but make no mistake, mostly I do it for me. That so many others benefit from my selfish lobbying is a bonus.
There are many others out there that fight the good fight everyday. Mostly it is for themselves so that they can take part in this big bad world of ours. And we need them. We need them to fight for themselves because through their fight so many other people benefit. Many people simply lack the assertiveness to fight for access. For many the fight for access brings unwanted attention to themselves and they simply do not want to cause trouble. This is not a criticism, It is just the way of the world.
But even those that don’t necessarily take up the fight actually do. Simply by doing things they educate others. People with a disability who live their life everyday educate others about the capabilities of people with a disability. They show people, some with pre-conceived and negative ideas about disability, just what people with a disability can do.
The deaf guy running his own dry cleaning business, the amputee at the bowls club, the bloke with Down Syndrome who takes part in Observed Trial motor cycle competitions – All these people are breaking down barriers simply by doing everyday things. They fight the good fight everyday. Arguably they do more for people with a disability than some of our more esteemed advocates.
We do not acknowledge these everyday heroes enough. Consider these examples of everyday people whose everyday battles are breaking down barriers for us all:
- My sister in-law fought for a life saving drug for her son who has Hunters Syndrome. She did it for her son but in doing so her efforts have benefited my own son and thousands like him who have a similar genetic condition.
- There is a mother in Adelaide who has fought for the very best package she can possibly get for her deaf daughter through the NDIS. She did it for her daughter but she has set a precedent that many other deaf kids and their families will benefit from.
- My friend Sandra who shared her story on the Rebuttal about her brothers battle with substance abuse. She highlighted her frustrations that she as a deaf sibling and her deaf parents could not support him more because of the lack of communication access. This is another example of a personal battle that is making inroads for us all.
- Fiona, who also told her story through The Rebuttal, highlighted her long struggle and difficulties with an eating disorder. She is constantly bringing attention the mental health systems lack of flexibility to meet her needs. Her battle will benefit the needs of other deaf people who need support from the system.
- Gaye Lyons and her battle to get representation for deaf people on the jury. Her personal battle has created untold awareness of the unfairness of Australia’s jury system and disability laws.
All these people are fighting everyday battles for themselves and in doing so are breaking down barriers for us all. Believe me, these people do a better job of changing the world than many of us more esteemed advocates, myself included. Every day heroes – Let’s never forget what they do.