Advocacy 101: What is Advocacy, what are Advocacy Types & why is this important?

Written by PDA’s VIC Director, Tim Harte

Speaking up for others or oneself is the elementary definition of advocacy. Crucially ‘speaking up’ is a variable course of action in the pursuit of achieving a specific outcome. Different forms of advocacy are characterised through the process of ‘speaking up’ and the scope of the advocacy’s aims. 

Individual/case-based advocacy aims to achieve a specific outcome for an individual. An NDIS appeal that advocated for provision of physiotherapy as an early intervention support in my NDIS plan is an example of individual/case-based advocacy. 

Systemic advocacy aims to achieve outcomes for the benefit of a population of people through modification of policy, procedure, legislation, or practice. A civil class action against a government body for non-compliance of bus stops with relevant disability discrimination is an example of systemic advocacy.

Within the scope of individual/case-based advocacy is: 

• citizen advocacy, involving individuals receiving support from volunteers;

• self-advocacy, where individuals advocate for themselves;

• professional advocacy, where professionals advocate on behalf of an individual;

• and carer/peer advocacy, where carers or peers advocate on behalf of an individual.

The literature base on advocacy in Australia states that professional advocacy is the primary advocacy type operating within the scope of systemic advocacy, however, systemic advocacy, in recent decades, is increasingly utilising knowledge from individual cases to contribute to the collective systemic advocacy case for policy, legislation, or practice change. Collective systemic self-advocacy coordinated by Disabled People’s Organisations, like Physical Disability Australia, conducts perpetual systemic advocacy work, utilising the individual experiences of People with Disabilities to understand flaws in system in order to work with Government in advising and advocating for solutions to reduce barriers and improve the experiences of People with Disabilities as they navigate society.1-4  

Why is advocacy important? 

Human rights are attained and realised through advocacy.5 Considerable historical background validates that advocacy, in various forms, has been successfully used to rectify discrimination and inequity experienced by vulnerable and marginalised groups. Examples of direct action, collective action and movement building by people with disabilities date back over a century, in 1920 the National League of the Blind in the United Kingdom successfully conducted mass protests about working conditions and poverty experienced by the disability community. In recent years, in Australia, the #LetHerSpeak advocacy campaign, founded by Grace Tame and Nina Funnell, successfully employed various key areas of campaigning to achieve legislative reform, amending the Criminal Code Amendment (Sexual Abuse Terminology) Act 2020 (Tas) s 5 to uphold freedom of expression rights for child sexual abuse survivors.6-9

Physical Disability Australia works to ensure the rights of all People with Disabilities are realised. As a Disabled People’s Organisations, Physical Disability Australia, mission is centred by the lived-experience of our members. Systemic advocacy is the process of us (PDA) speaking up and elevating the voices of People with Disabilities to ensure decision makers know what barriers our community encounters and what solutions are available to resolve and overcome these barriers.


1. Dalrymple, J., & Boylan, J. (2013). Effective advocacy in social work. Sage. https://dx.doi.org/10.4135/9781473957718

2. Dunning, A. (1995). Citizen advocacy with older people: a code of good practice. Centre for Policy on Ageing.

3. Forbat, L., & Atkinson, D. (2005). Advocacy in practice: The troubled position of advocates in adult services. British Journal of Social Work, 35(3), 321-335. https://doi.org/10.1093/bjsw/bch184

4. Rossetti, Z., Burke, M. M., Rios, K., Tovar, J. A., Schraml-Block, K., Rivera, J. I., Cruz, J. & Lee, J. D. (2021). From individual to systemic advocacy: Parents as change agents. Exceptionality, 29(3), 232-247. https://doi.org/10.1080/09362835.2020.1850456

5. Brolan, C. E., Boyle, F. M., Dean, J. H., Taylor Gomez, M., Ware, R. S., & Lennox, N. G. (2012). Health advocacy: a vital step in attaining human rights for adults with intellectual disability. Journal of Intellectual Disability Research, 56(11), 1087-1097. https://doi.org/10.1111/j.1365-2788.2012.01637.x

6. Assembly, U. G. (1966). International covenant on civil and political rights. United Nations, Treaty Series, 999, 171. https://www.ohchr.org/sites/default/files/ccpr.pdf

7. Dallaston, E., & Mathews, B. (2022). Reforming Australian criminal laws against persistent child sexual abuse. Sydney L. Rev., 44, 77. https://search.informit.org/doi/10.3316/informit.500121913977664

8. French, S. (2017). Visual impairment and work: Experiences of visually impaired people. Routledge. https://doi.org/10.4324/9781315569536

9. Nash, A. (2001). People. dot. community: A resource for effective community activism. Villamanta Legal Service.

A successful 2022 Annual General Meeting

On Saturday PDA held its AGM – bringing together our Board, Members and Ambassador, Dinesh Palipana OAM.

It was wonderful to have so many join us to hear about the work, successes and momentum of 2022 and the plans for 2023 and beyond.

Thank you to all those who attended and all our Members who continue to play a role in PDA maintaining its place as an active, understanding and relevant supporter of Australians living with physical disability.

If you’re not yet a PDA MEMBER and have an interest in making a positive contribution to Australia’s disability landscape, think about signing up for FREE MEMBERSHIP by going to

www.pda.org.au/membership/

We look forward to welcoming you to the PDA community.

PDA’s President speaks with Channel 9 Perth about his home modifications and the need for the WA Government to commit to accessibility standards reform.

Earlier this week PDA’s President, Andrew Fairbairn, spoke to Channel 9 Perth about the State Government’s delayed decision to commit to implementing the accessibility standards in the National Construction Code.

The WA State government is being called upon to implement accessibility standards in all social and private housing construction.

Check out Andrew’s interview by going to:

https://www.facebook.com/watch/?v=2345062925652841&ref=sharing

PDA Members are invited to our AGM this Saturday (19th November 2022) via Zoom.

Join us to hear what we’ve been up to in 2022, what our plans are moving forwards and be part of the Physical Disability Australia conversation.

With updates from PDA Ambassador, Dr Dinesh Palipana OAM, and the PDA Team, our Annual General Meeting will be a great chance for Members to be an active part of the PDA community.

2:00pm Sydney/Melbourne/Hobart/Canberra

1:30pm Adelaide

1:00pm Brisbane

12:30pm Darwin

11:00am Perth

We hope that you join us and look forward to welcoming you.

Wherever you are in Australia, you can attend via Zoom.

All you need is a phone, laptop, tablet or computer.

But you will need to register by going to:

https://us02web.zoom.us/meeting/register/tZcvdO6orDkqG9DcjONXLQKDcEUDwdf3P6_N

If you don’t have a Zoom account, signing up is free, quick and easy. Follow the prompts to create an account.

If you experience problems, please email us at promotion@pda.org.au or call 1800 PDA ORG (1800 732 674).

After registering, you will receive a confirmation email containing information about joining the meeting.

Meeting documents will be provided ahead of the meeting.

We really look forward to you joining us and saying “hi”.

Have you visited PDA’s YouTube channel lately?

There are some really interesting, informative and entertaining videos to watch – including our two most recent webinars around “Disability and Relationships”.

In “Relationships Part 1: Family, Friends and Support Workers” (https://www.youtube.com/watch?v=Ijm7gzLKHww) our 3 panelists will share their stories around relationships and the challenges that they have faced and (in some cases) continue to deal with.

From family dynamics with parents, brothers, sisters, maintaining boundaries with support workers, knowing who your true friends are, and an interesting look at relationships from the perspectives of both a mother and son, this is a very insightful presentation.

In “Relationships Part 2: Intimate Relationships” (https://www.youtube.com/watch?v=gUOhg7irPZ0) the presenters will honestly and frankly share their personal stories, discussing the ways disability has shaped and influenced their relationships. They will also give insight into challenges encountered in their love lives and the importance of both partners’ needs being central to the conversation.

From waning libido, to loss in confidence, to finding practicable ways to be intimate and finding (and keeping) your perfect soul mate, this webinar will cover topics that are all too often swept under the carpet.

What happens if disability gets in the way of a sexual or emotional relationship? What if sex is a challenge or just not of interest to one partner? What if fear or lack of confidence sabotages a relationship or the search for someone to love and to be loved by?

A great exploration of intimacy around disability that shouldn’t be missed.

Do yourself a favour and check these (and all of PDA’s other videos)out.

Whilst you’re there, don’t forget to subscribe to the PDA YouTube channel so that you’re kept up to date with all future webinar additions.

Autonomous Cars and the 7 surprising ways they will change your world.

Tyson Grubb (CEO, Instrument Choice) has written an interesting piece on autonomous cars.

PDA’s NSW Associate Director, Peter Simpson, believes that this technological advancement will leave wheelchair users out in the cold in the same way that wheelchair accessible taxis has done.

Thank you to Tyson Grubb for allowing us to share this article.

I’m a bit of a thinker, often I get side tracked considering how the future is shaped by the decisions and technologies that are coming about today.  

In 2016 I was fortunate to get access to see Googles autonomous vehicle test track in California, watching these cars go about their business with no drivers on board made it clear to me that the future of human drivers was limited.  When we consider the exponential growth in computing power (check out Moore’s law), the reliability and likelihood of this technology becoming mainstream grows exponentially.

Autonomous cars will likely be commonplace at the start of next decade.  This will change the way we travel, the way we own cars and is predicted to bring traffic accidents close to zero.  You might have heard about some of the effects of self-driving cars, like the loss of jobs of truck drivers or the reduction in accidents once most cars are autonomous.  There are other knock on effects of technology you may not have thought of, there may be other factors that could affect these outcomes, but these are my predictions based on what could happen (without considering other unknowns such as world economic changes or government regulations etc).

1. Regional house prices will grow faster than in the city
Many people dream of a tree change, but their work commute stops them from making the leap.  Now with work from home increasing (because of the pandemic), regional prices have pushed up, this trend will continue when you can do other things instead of driving (while your car whisks you to work), you can sleep, work, have breakfast, have a meeting or catch up on more Netflix, you won’t think twice about a longer commute.  And with regional property supply being restricted while demand increases, the price of country living will go up.

2. Will you own a car?
Probably not.  You see, once the cost of the driver is eliminated then the cost of a ‘taxi’ or ‘Uber’ type service will shrink significantly, and for most people it will be much cheaper to use a short-term car hire service than to own a car (forget dealing with the maintenance costs and issues that comes with car ownership).  You may miss your own car at first, but when you can press a button on an app and a car arrives to your location within minutes and can take you anywhere for a small fee, why would you bother having your own car.  The question then will be, what will you use your garage for, a games room, home office or the ultimate man-cave or she-shed?

3. Car parks will die
So, cars will pick you up from wherever you are and drop you off where you want to go.  But what does the car do in-between?  It picks someone else up, it keeps working, it keeps transporting people and so does not need to park anywhere.  Of course, it will need to refuel or recharge its batteries (as they will be electric or possibly hydrogen powered), but this will be a much shorter period than if you were to park your car for meetings, shopping, entertainment etc.  And the carparks for charging will probably exist in cheaper real-estate on the outskirts of cities (pushing up the prices of the land on the edges of cities a little too).

4. The car insurance industry will collapse
With only companies owning the cars (this is Uber’s plan by the way), and no accidents, what will the car insurance industry be able to charge for?  Not much, car insurance will be a thing of the past for the general consumer and the companies that own the cars will pay a much smaller amount as accidents reduce to next to nothing.

5. Bus routes will become more nuanced
Buses will be smaller and the number of routes will increase, buses can take you closer to where you want to go.  Think of them more as a larger car pooling service where you are sharing with a group of people based on where you all want to go at that point in time.

6. Package delivery costs will shrink
With the drivers not needed for long haul cross road transport, safety rules not requiring breaks then the cost of trucking goods will decrease.  For cross town transport, the autonomous truck will rock up at your house or work, and a drone will do the last 20m of delivery, dropping the parcel safely at your door.

7. Police will need to raise revenue from somewhere other than traffic violations
Autonomous cars will be programmed not to break the law and so won’t.  In 2017 Australian speeding fines totalled $1.1 billion, without considering all other traffic violations and that this number would likely to have increased in the last 5 years.  This is a lot of cash the government will not be receiving, but then perhaps less police will be needed as they won’t be spending their days monitoring traffic. Will there be less police, or will police be moved to where they are needed?

I am sure there are more knock-on effects, and over the next 8-10 years a lot will change too.  

How do you think autonomous cars will change the world?  Is it good, bad, or just is what it is?  Would love to hear your thoughts.

PDA Members are invited to our AGM on Saturday 19th November via Zoom.

Join us to hear what we’ve been up to in 2022, what our plans are moving forwards and to be part of the Physical Disability Australia conversation.

With updates from PDA Ambassador, Dr Dinesh Palipana OAM, and the PDA Team, our Annual General Meeting will be a great chance for Members to be an active part of the PDA community.

We hope that you join us and look forward to welcoming you.

Wherever you are in Australia, you can attend via Zoom.

All you need is a phone, laptop, tablet or computer.

But you will need to register by going to:

https://us02web.zoom.us/meeting/register/tZcvdO6orDkqG9DcjONXLQKDcEUDwdf3P6_N

If you don’t have a Zoom account, signing up is free, quick and easy. Follow the prompts to create an account.

If you experience problems, please email us at promotion@pda.org.au or call 1800 PDA ORG (1800 732 674).

2:00pm Sydney/Melbourne/Hobart/Canberra

1:30pm Adelaide

1:00pm Brisbane

12:30pm Darwin

11:00am Perth

After registering, you will receive a confirmation email containing information about joining the meeting.

Meeting documents will be circulated ahead of the AGM.

We really look forward to you joining us and saying “hi”.

The most terrifying experience of my life was the day that my voice was taken away.

Written by Tammy Milne – PDA TAS Associate Director

The most terrifying experience of my life was the day that my voice was taken away.

For most of my life I have lived with paralysed vocal cords. If I was a horse I would have been shot! In horses it’s called roaring and means they struggle to breathe and make a noise like they are roaring for breath and that’s exactly my experience. Most people breathe through a nice big fat airway like a hose pipe, with me it’s like I breathe through a piece of spaghetti, dragging each breath in slowly and using all my energy to do so. It feels horrible and sounds horrible and basically it is horrible, but I have learned to live with it.

Then came Covid-19. I contracted it in April. My spaghetti pipe was congested, but somehow I coped ok. Then the next month came, along with virus number two and then virus number three.
I presented at the ER every day for four days, unable to breathe and really struggling. The ER doctors finally wrote a referral to my GP to ENT services in Hobart. After some issues with miscommunication, the referral was sent through.  Two weeks later I was in Hobart’s Specialist Clinics. 

My lovely ENT doctors Raj and Nicco were like excited children when they looked down my throat with the scope. Like I knew I was bad and had been getting worse with age and since covid, but I had no idea that it was that critical.  I was breathing through an airway space of about 2mm and my vocal cords were static – neither opening or closing as normal vocal cords should.

I was categorised as CAT 1A which is basically top of the list of elective surgery and was told I would be operated on within a month after some other tests were completed.

So on the 5th October I presented at Wellington Clinic for my pre-admission. I spent the next day and a half trying to have as much fun as I could, which also included getting a guardianship order to give my daughter power of decision making  if things didn’t go well. Not the state guardianship orders, but my own private lawyer drew them up. Something that I suggest everyone should do before something huge like this.

At 6.45am on Friday 7th October, I presented for admission and at about 11.30am I was sitting in recovery drugged to the eyeballs – breathing like a marathon runner but not able to speak. My voice was gone. The operation of which I had consented to save my life involved cutting a section of my vocal cord to make the opening to my airway bigger. For this to happen and for recovery I was given a tracheotomy. I now breathe through a pipe in my neck. This will be temporary as my vocal cords heal.

So what happened next?

I have a second language. I use Auslan (Australian sign language) – the language of the Deaf.  So as soon as I woke up from surgery I defaulted to sign. Many people who have a second language do this when they are unable to communicate in their first language. The thing is not one of the hospital staff could sign AT ALL. 

The more I couldn’t communicate, the more frustrated I became. I am an advocate. I self advocate and I advocate for others. Communication is part of my being – as it is for everyone. Can you imagine what it is like to wake up with your voice is gone? It’s like your autonomy is gone. Things happen to you rather than you having a say and being able to ask questions. The fear is real. Your control is gone and you are helpless.

I was given a communication whiteboard early on but, as my frustration levels increased and my fear escalated (especially after the drugs wore off), my handwriting became increasingly hard to read. It’s funny as when I did a prac on a prep class they actually told me my handwriting was terrible. Out of the mouths of babes!

I continually asked each new nurse, doctor, physio, speech therapist, dietican if they could sign? They could not. By day two  my daughter was coming into ICU , interpreting regularly. She grew up with Deaf kids in her class throughout her schooling and of course I have signed with her throughout her life. On one occasion she sat and interpreted for 4 hours straight. Relaying my fears and anxiety to the nursing staff.

It wasn’t until day 8 post surgery that a professional interpreter was booked to come. I was to have my tracheotomy changed and she was able to voice all my concerns that I signed to her about what was going to happen. I could have cried with gratitude. I could sign, “ouch that hurts” as the procedure  went on! She was there to be my voice and I could communicate freely again.

Coincidentally that night a young Doctor, Dr Dave, came to change my cannula and he too could sign. However, he was from Ireland so his signing was like the difference between German and English. But he understood and had seen how vital sign language was for his sister at home in Ireland using sign language. We had a good chat with writing things down and mime.

After working as an interpreter for the Deaf for the first 16 years of my Education Department career, and being involved in the Deaf community, like most people I still only had an empathic view of what it’s like to not be understood. Of having your means of communication not understood by the wider community, of the discrimination, the miscommunication, the lack of control and the loss of autonomy. Like them, things happened to me rather than my being involved in decision making with a clear understanding of what was going on. I couldn’t ask my questions freely. I was silenced.

This experience has taught me so much! Sign language needs to be a part of our health system. There needs to be charts of key word signs in each room with words like toilet, food, drink, pain, yes and NO! There needs to be more access to interpreters in ED. Imagine coming into ED and not being able to communicate your needs? There needs to be sign language classes built into nursing courses at University. 

The benefit of this is that student nurses will see what it’s like to be from a background where English is not your first language. It’s not just the Deaf who use sign language. Many people with intellectual disabilities also use key word sign, just like Dr Dave’s  sister in Ireland. Lastly, we need to introduce sign language to practising nurses on the wards. We could run some classes. Heck I’m up for it! If just one nurse on a shift had at least the basics of sign, imagine what that would have done for me and for my comfort during my hospital stay. So I plead with government to listen to my story and move forward with a plan to make communication more inclusive for Deaf and intellectually  disabled people in hospitals and for people like me. My experience was only for 8 days, but those 8 days were the most terrifying and frustrating time of my life. My voice will come back, but the lingering memories of being isolated and alone will not leave me.

Image of a smiling lady in a hospital bed, wearing glasses with a smiling man, wearing doctor’s scrubs bending down next to her. He is Dr Dave.

The Real Cost of Disability

A recent Pro Bono Australia article (https://probonoaustralia.com.au/news/2022/08/research-shows-economic-cost-of-declining-mental-health) highlighted the findings of an “Impact Economics and Policy report” commissioned by a number of organisations including the NSW Council of Social Service – NCOSS (NCOSS) and the Mental Health Coordinating Council.

This report included the rising rates of mental health disorders during the Covid-19 pandemic, the associated economic and social costs and the spate of natural disasters that have exacerbated the situation.

“People with a disability are four times more likely than people without a disability to experience high levels of psychological distress and are up to four times more likely to die during a natural disaster.”

In March this year a coalition of 40 leading disability rights (including Physical Disability Australia), advocacy and peak body organisations wrote an open letter to politicians across the country prior to the election, in which they demanded improved disaster and emergency responses for people with disability.

You can read this by going to https://qdn.org.au/wp-content/uploads/2022/03/Final-Joint-Open-letter-leave-no-one-behind-310322.doc.pdf

With flood devastation currently impacting much of Australia, our Government must action the development and implementation of a comprehensive and disability inclusive disaster preparedness plan to reduce the human impact of disasters.

#LeaveNoAustralianBehind Mr Albanese.