Learning to advocate for yourself is a very important skill for people who are disabled, even more so for those who are non-speakers.

Many people believe those who are nonspeaking (and sadly some of these people are a part of the disabled community) are unable to represent themselves and should not be represented. 

Communication First aimed to dispel this with the documentary LISTEN which was created by non-speakers to educate people about how this ignorance can be a bad thing.

It can be scary learning to self-advocate, in fact, it can be scary every time you have to do this, especially when the person or persons are a part of an organisation that holds a lot of power (been there, done that… thankfully I was backed by a very good Lawyer!), but it does get easier!

Recently I had to do a lot of self-advocating, and that self-advocacy has at times ended up with me being an advocate for others too, for example standing up for what is and isn’t acceptable language to be used around someone with a disability. 

One of my support workers sometimes works in another house with a guy who is 28 years old and is nonspeaking and has often referred to his behaviours as “cute”. This to me is a big NO-NO. He’s not a child and so should not be treated like one!

So, on that note, yes it can be nerve-wracking but being able to self-advocate is one of the biggest achievements one can undertake.

About the author: 

I am a 42-year-old man, who is born and raised in New Zealand. I have PHACES Syndrome which is very rare (there are only around 5 of us in NZ and I am the oldest we know of here), this affects my brain, senses, muscles, nervous system, vascular system, as well as the skeleton and connective tissue.

I have a Certificate in Social Services (Biculturalism), which helps me in my advocacy work, but I would love to work with children with special education needs. I write poetry, short stories and have written a song. I also paint and play a strong part in my Church community. I love knitting and music, anything related to space and cats, and my favourite show is Star Trek.

I was recently published in a book, telling my experience over lockdown as a person with a disability.