I had my doubts about adopting the label 'advocate’ before attending the recent Arts Access Advocacy: A National Partnership workshop.
My cautionary approach harked back to a bad experience I had at a public meeting a year or so ago. It was advertised by a well intentioned autism non-profit organisation as a community event for caregivers, family, friends - anyone who wanted to engage with like-minded folk and the local support network, which was a great idea in principle.
What started out as a welcoming and inclusive atmosphere soon descended into an all out bun-fight over funding and support between several representatives for rival organisations and service providers.
Armed with an agenda
They came armed with an agenda and a soapbox which they stood on to rattle off multiple acronyms and industry terms. They called themselves ‘advocates,’ and they came to push their cause... but in their loud and brash approach, the families, loved ones and actually autistic individuals in the room were left feeling confused and even more socially isolated than before.
This made me so angry! Their noisy protest dominated the conversation, drowning out the voices of the ‘quietly interested but easily scared off’ voices whose views are so often lost in the crowd.
Untapped wealth of experience
These are the voices that we need to hear more from - the people that live every day with disability, not the paid professionals who attend meetings within work hours. Of course these people play a great role in the disability community, but they are now well-represented. Instead we should look to the smaller, quieter individuals hiding in the back row of the same meetings ... Imagine the wealth of experience and knowledge in the wider disability community currently untapped due to being constantly talked over and involuntarily on behalf of.
In the early stages of my blogging career, I thought that to be relevant, I needed to be the voice of my daughter Sophia’s autism. That’s what all the most popular ‘autism mum’ type parenting bloggers were doing. Sophia doesn’t talk (yet) so how would the world know what her life is like if I didn’t spell it out for them? With time and experience, I realised that by acting as her mouthpiece I was robbing Sophia of her own opportunity to tell her own story in the future.
Now, I only write from my own perspective. In doing this, I am free from having to guess what autism and Sophia’s world is like. I can emote my own unique viewpoint with pure honesty.
A genuine voice
At the workshop I listened intently to all of the experiences of the participants. Over the following days it became clear to me that an ‘advocate’ is simply a voice. It doesn’t have to be the loudest or the most persuasive, it just needs to be genuine. Honest emotion, devoid of drama or prejudice rings loudest and strongest for me.
Advocate is now a label I am happy to adopt!
We all have a voice, we all have an opinion. Some of us prefer to keep it to ourselves, other are happy to share it with an audience. That is the only prerequisite - if you are willing to share your voice, then you can be the greatest advocate for your cause.
When a voice carries a persons honest feelings, opinions, fears and hopes it can change the world. No soapbox required.