The reluctant advocate

By Fiona Lawton

This right to vote is the basic right without which all others are meaningless. It gives people, people as individuals, control over their own destinies – Lyndon B. Johnson

I can safely say that I haven’t always been interested in politics. I’d often switch off at dinner party conversations that discussed ‘government fiscal policy’, ‘geopolitical tensions’ or ‘socialism versus capitalism’. I generally thought politics was boring, and a subject for those in the ivory towers to contemplate unless it was a matter of human rights. That would certainly get me interested but my activism was typically limited and locally focused.

However, I was jolted out of my comfort zone in more ways than I can contemplate when I gave birth to a child with complex special needs. As many parents quickly learn, it is in this moment that we are thrust unwittingly into this world of advocacy – whether we like it or not.

But there is something deep inside the special needs parent that moves you quickly from being a ‘reluctant advocate’ to someone who finds your fierce voice to speak up – to highlight concerns, social inequities, and general unfairness.

Living with or caring for a loved one with a disability will do that to you!

I soon found myself regularly advocating for my child in response to the assumptions made by others about his ability to understand, his capacity to achieve things, or his ability to meaningfully engage in communication, social relationships, and religious and civic society.

It was a conscious decision for our son to participate in religious ceremonies to the level he could because who were we to assume he did not have the capacity or understanding to explore his spirituality? A deeply personal thing for many of us we felt he needed the opportunity to explore this side of life and to make his own decisions.

So it was to be with politics. Our son turned 18 late last year and as the Federal Election was called in Australia, we contemplated how we would support him to engage in his democratic right to influence the political discourse and direction of our country.

Yet as we supported him to enrol to vote and showed him how to sign an electronic document with a mouse, we became aware of a piece of legislation that has been used to exclude people with an intellectual disability from their democratic rights.

The archaic Commonwealth Electoral Act 1918 can prevent a person from enrolling to vote or remove a person from the electoral roll if they are deemed to be of “unsound mind” and being “incapable of understanding the nature and significance of enrolment and voting”.

Now there is one thing that my son definitely knows and that’s his mind!

At every turn, he will communicate what he wants to do, who he wants to do it with, and if he agrees with you or not. He influences his day and those around him every day. Our home and his environment are full of communication tools, equipment and aids to help him fully engage and express his opinions and desires.

Yes, he has an intellectual disability, has complex communication needs, and requires support in making decisions about all aspects of his life, but to be deprived of his right to vote for a government, by the government?

That didn’t sit right at all. In fact, I was shocked to learn that the default position was that people with significant intellectual disabilities would not typically vote.

In 2014, Australian Law Reform Commission issued a report calling for the electoral act to be amended. It highlighted that the laws in Australia were “inconsistent” with Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities, which states “people with disability must be afforded the right and opportunity to vote on an equal basis with others”.

Yet 8 years on, we were still here and legislation had not moved. We felt compelled to test the process and the maturity of the system to ensure our son and people with disabilities like his had the right to vote.

He used a mouse to sign the online enrolment form. We watched morning television and the evening news with him every day and discussed the big issues with him. Disability, COVID19 response, healthcare and climate change were all matters directly relevant to him.

When the political advertising arrived in the letterbox, we read it with him and explained what each candidate was promoting. He even met a local candidate for afternoon tea!

I made an Aided Language Display using some of the Australian Electoral Commission Easy Read resources and we used it to describe the structure of the government and the voting process. I will admit I only included numbers 1 to 6 on the sheet – who votes below the line in the Senate anyway?!

When we headed out on a cool and rainy day to vote, with his wonderful support worker in tow, we had no idea how it was going to go. I must admit that I was a bit anxious – would we be welcomed? Would the staff understand our needs and support us in the process? Was it going to be too much for him to cope with being around all these strangers? The usual angst of a special needs parent!  I took a deep breath and reflected that we were probably more prepared than many who were already queued up to exercise their rights.

We were fast-tracked through the dedicated entrance for people with disability and spared the long wait – which let’s admit, would have been a challenge. Waiting isn’t our strong suit.

We went up to the AEC staff member and, using his AAC voice output device, our son stated his name and address. He also explained that he loved musicals and had recently been to see Guy Sebastian in concert! There were smiles all around. Together with the staff, we explained about the green and white sheets, and the need to number 1 to 6 in the boxes, and then headed to the booth.

I had gathered all the ‘How To Vote’ sheets from volunteers on the way in and laid these out and asked my son to pick a candidate and a number for each. Now I am not sure if he was making a protest vote, but he allocated the first two parties he selected to 6^th place. And a few selected sheets ended up thrown on the floor– that was statement enough for me! He did ask if he could vote for Guy Sebastian and was rather disappointed that he wasn’t running in this campaign. But then he had a clear #1 in his mind, was emphatic with his choice, and we were off and running.

We worked our way through the numbers on the green ballot and I wrote them in for him. When asked if he wanted to do something different in the Senate, he asked for the same on the white sheet.

All finished, he walked over and posted his ballot all by himself, shoving those papers into the boxes. Years of practising posting shapes into boxes had finally yielded a reward 😊

And at that moment I found myself teary and feeling huge pride.

There are so many things every day that are hard for my son to do.

And there are so many things that he will never be able to do, like drive a car.

But one thing he absolutely could do was to make choices about who he wanted to have in government to represent him and to help amplify his voice.

He knew his own mind. And he voted!   

Like the rest of the country, he will now need to see what the next 3 years bring, but at least he will know that he had his say. And I for one am grateful to have heard his democratic voice.