Insights from Disability Campaigning from Rochelle Porteous

By Holly Hammond, Rochelle Porteous

Rochelle Porteous is an experienced campaigner on a range of issues and the Advocacy Manager at the Council for Intellectual Disability. Holly Hammond, Director of the Commons Library, interviewed Rochelle to find out about her rich history of campaigning and some of the key wins and insights.

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Interview recorded on 18 May 2023.

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Campaign experience

Holly Hammond: Welcome Rochelle Porteous from Council for Intellectual Disability. Can you give us a sense of how you first got involved in activism, advocacy and campaigns?

Rochelle Porteous: I’ve always been very interested in the communication side. I guess I started my journey in film, working initially as a script writer, and then moving into directing, mainly short films and some documentary work. Then I got quite involved politically in a number of local campaigns. It really awoke in me the importance of communications.

What really fired me up and still does today is empowering people to be able to campaign for themselves. Seeing that light bulb moment happen when people realise they actually have a voice, and that people are listening to them.

That there’s power in what they’ve got to say, and that they don’t have to self edit 24/7 what they’re saying because the honesty and the rawness and the passion that they bring to what they’re saying is the compelling message that they are giving people.

I have a lot of experience in the political space, I have spent many years as an elected representative as well on local council. I’ve been a councillor and a mayor. That’s also where you further get involved in local campaigns, and really get down to how to win campaigns that seem impossible to win. You often work with community groups where you don’t win the campaign. But I’ve so often heard people say, ‘We haven’t won a campaign, we didn’t win, but we got heard, we got acknowledged, our issues were listened to. Although we didn’t win this campaign, we’re coming away from it in a much better space, because we know that we tried and we were listened to and, and we fought to get a better outcome’. And then you get the ones that you win, which obviously are the highly motivating campaigns where you really do change things for the better.

A lot of my campaigning employment is at a state and a national level, because I’ve worked for different organisations like Greenpeace, I’ve worked on campaigns like the Kevin 07 campaign, the campaign to eradicate poverty worldwide, and social justice campaigns around domestic violence, childhood sexual abuse, and other issues. I’ve worked in a lot of different spaces, and often in a campaigning role in those spaces. But whether you’re working with a group of 10 residents, in your local community, or you’re working across Australia, with 1000s of people, they’re not that different. It’s really about empowering and activating. Doing your research, doing your power mapping, mapping out where the power lies in the campaign, who it is that you have to move in order to effect change, strategizing, how that change is going to happen. Doing your critical pathway – and usually it’s more than one pathway that when followed will achieve your outcomes. Then looking at the communities that you’re working with and how you work specifically with those communities.

For example, working now at the Council for Intellectual Disability, my core community is people with intellectual disability. It’s an interesting and challenging space to work in, but a very rewarding one.

I work with people with intellectual disability, who want to have their own voice, who want to make their own decisions, and who want to have their own campaigns that are campaigns that they have chosen to run on their issues in their way.

They are part of that process all the way through. I find it very, very rewarding, but also very liberating, actually, to work with people with intellectual disability. I always find their perspectives very original, they often take me in directions I didn’t expect to go. But when I go there, I think actually, that really works. That’s completely different to say, working with a group of fired up environmentalists who want to save whales or who want to stop coal fired power stations. Each community that you work with is completely different. You need to read your community really well, to understand how you can motivate them and how they can be activators along the pathways that you want them to follow in order to become powerful advocates.

Elements of effective campaigns

HH: There’s obviously been a lot of campaigns in your life! I’m really getting a sense of the different kinds of scales, the different topics, the different realms. I really liked how you also set out some of those elements of an effective campaign, the kind of strategy work that you do in the lead up and the relationships you build.

RP: I have become increasingly professional in my campaigning. Because of all the community campaigns that I’ve been part of, I’ve seen what worked, what hadn’t worked, where things have gone awry, and how to correct that. Often with campaigns that need to happen very quickly, you don’t get the luxury that you may have with a campaign run with an organisation to actually sit down and do that serious research that is so critical to a successful campaign. Some of the campaigns that I’ve run with the organisations that I’ve worked with, I’ve literally done months of research, before getting to the next stage in the planning.

This often involves addressing questions such as:

What’s the problem?
How has the problem arisen?
What is the solution?
What are the asks going to be?
Who are the people that can address those asks and can resolve the issue?
How do I get to them?
What is going to be the critical pathway that is actually going to lead to success?

I was actually doing a debrief the other day with colleagues on a campaign that we ran leading up to the recent state election. But actually reviewing the critical pathway that I’d written almost 12 months ago, it was really pleasing to see how much of that had been followed. It was very organic in the sense I didn’t go back to the path to check ‘what next?’ It becomes a natural progress from one element to another element and everybody takes on their particular roles.

I find that you have to be very fluid and flexible and nimble in the way that you approach campaigns. The way the world is today, it can be quite different tomorrow. That’s not just the big ticket items, like a change of government, it could be a smaller thing like a change of minister. Very often, it’s just an announcement that might come out overnight from government, which moves your goalposts, and you have to completely rewrite your campaign in 48 hours, in order to address what suddenly has become a different way that you’re going to have to approach the campaign. To be honest, that happens all the time, that’s the nimbleness that you need in your approach.

HH: Knowing the value in doing the research, the value in coming up with a plan, but also that these plans are living documents and that your campaign is going to need to respond to shifting circumstances. Having a strategic outlook when those changes happen, means you’re also able to choose how you respond, that fits in line with the kind of strategy you’ve thought through.

RP: Yeah, absolutely.

The Hard to Swallow campaign

HH: You mentioned the campaigns you win that are such a source of inspiration and motivation for everybody. Are there campaign wins that you’d like to share, particularly around campaigns for people with disability?

RP: Fortunately, we’ve had a lot of campaign wins. I don’t stop until a win actually!

Tenacity is probably one of the most important elements in campaigning. You don’t stop, you keep going.

It is the one that keeps going when others have fallen off, that will eventually win the campaign. And if it’s you, as a campaigner to change, you will win. But it’s very, very hard to keep going. That’s where the real challenges are. If you’ve got a great group of people who are really motivated, and focused, including the people that you’re campaigning for, it makes a huge difference to that motivation.

There was the Hard to Swallow campaign, which we ran back in 2018-2019 with the Council for Intellectual Disability. It was about dysphasia, which is difficulty in swallowing. A lot of people with intellectual disability also have dysphasia. When there was the transition to the NDIS from the previous system, and from Health funding, somehow the therapies that support people with dysphasia got left out of the NDIS. These are people with permanent disabilities and the therapies can be a big difference to how well they can function day to day in the community.

For example, for one young woman, it was the difference between her potentially choking every night and being able to sleep through the night. Which had terrible impacts on her family, particularly on her young brother. When we interviewed him, he said that, when they took the therapies away, it was just terrifying because every night he would start to hear his sister choke. He knew that he had to get up quickly and go in and help her to stop choking because she was unable to swallow properly. The trauma that he was experiencing as a 11 or 12 year old, and his sister was, I think 14. They were very close, obviously.

Basically the NDIS refused to take on these therapies and fund them. But Health turned around and said, ‘Well, we’re not funding them, because it’s a responsibility of the NDIS’. In the middle lie the people who have dysphasia, and their families, who are no longer getting therapies, and are unable to fund them themselves. Their health professionals are saying, ‘This is essential’, and sometimes even providing the therapies for free because they knew that it was a life and death situation. It was a terrible, terrible situation which was being ignored by the NDIS.

We started the campaign with a story, which was a very compelling story of a mother with her daughter. We ran that for quite a while and it got a great response. We had lots of lobbying, lots of advocacy, but we couldn’t get it over the line. So we then found another story, the one I just told you about the young brother, and the family. We filmed this story in a video, and we got out and pushed that story really hard. We had all of our members with intellectual disability going and talking to their local MPs. We got great activation, right across the intellectual disability community and our membership and our supporters, to talk to as many members of parliament as possible. Then we got the media on board as well, they really embraced the story.

Basically, the government started listening. Then they made a promise that they would address it. We got an article in The Guardian, and they said, ‘Yes, this is a serious problem, we will address it’ but they did nothing. So we got another article in The Guardian, really damning them. And that time, we got a phone call within 24 hours, ‘We’ve done it, we’ve changed the rules. Now everybody’s going to be funded for dysphasia’. So suddenly, that family, they got called up and told the treatment was being funded.

It took a long time. We couldn’t have given up after stage one. Let’s give it another go. Let’s find another story. Let’s make it even more compelling than the first story. Let’s really push it out. Let’s push hard to get our members totally activated on this one. And we did and that was successful. The wonderful thing was once we did win there was an acknowledgment that the NDIS had not funded a whole lot of allied health therapies because of this gap between the NDIS and Health. So it ended up being beneficial to not just people with dysphasia but for people with diabetes, people with incontinence issues, there are about seven or eight different areas. I think the final number was about 63,000 people benefited from this particular campaign that we ran because it changed the mind of the government. They realised that they had to fund these therapies because by not funding them, they’re actually putting people’s lives at greater risk. It was in the shadow of the federal election, straight after Scott Morrison got reelected. But he made a point of inviting CID members to meet with him to acknowledge the work that CID had done in terms of changing the rules in the NDIS. That was a really good campaign.

HH: That’s awesome, the way that it shows the power of a good story. A story that is going to have an impact, it’s going to be picked up by the media, but also that it really resonates with your members and supporters, so that they’re going to be telling the story as well. And really amping up that impact. The other thing I hear in that campaign is that you weren’t afraid to hold their feet to the fire. You kept trying, and trying, and kept that pressure up until they’re like, ‘Stop it. No more pressure. We’ve done it. We’ve made the change’.

RP: I think you’re right, the narrative is really important. Having compelling stories is something that I always look for in campaigns, because it makes the issue accessible to everybody. Because if you say dysphasia, even if you say, ‘somebody has difficulty swallowing’, the response is like, ‘oh, whatever’. It’s when you actually see a person understand, see the impact on the family, and hear the story from the brother, about what happens and how terrifying it is, when their daughter and sister can’t swallow. And you hear from the allied professionals about how easily it is addressed and remedied, because as soon as she got back onto the therapies, literally, within a week, she was sleeping through the night and no longer had any choking. I mean, that’s how easy it was to remedy.

HH: It also shows the power of logic in a campaign where there’s a problem, but there’s a solution. And the only thing that’s getting in the way of the solution is the political will or whatever other barrier it is that the campaign can look to leverage, look to get in there and shift that situation.

Leading from behind

HH: Tenacity is really coming through. How do you decide when it’s not your battle, or when it’s time to kind of pass the baton to other people?

RP: I tend to be a person who says yes to too much. So that is something I’m trying to address, because that’s not sustainable. I do think there’s a point where you, as a campaigner, you do step back, and let a campaign continue, in order to let other people come out as the leaders. If it’s a community campaign, you can be a leader for quite a period of time and then say, ‘Well, this has got to a good stage, there’s a lot of people here who know what they’re doing. There are leaders here who can carry this forward, I don’t need to be a leader anymore in this space, I’m going to step back because I want to concentrate my efforts now on this other campaign that I haven’t been able to give much of myself to, because I’ve been so involved in this campaign’. So you step back and let others lead.

I do believe in leading from behind. I think that’s important in all campaigns, including the campaigns that are run in the disability space. That’s why I think co-design is so important. In fact, all of our campaigns are co-designed from the start, and right throughout the campaign.

It’s important that you identify who your spokespersons are. I never spokes on any of the campaigns, I prefer to help people write their public speaking notes, to enable them. Enabling others is more important than taking personal accolades. It’s totally unsustainable to do that. A campaign needs lots of leaders, and it needs lots of voices. If you’ve got the skills, you should be providing that support from behind. There’s times when you need to be upfront, but most of the time, it’s more effective to be behind.

HH: It’s a good organising approach to be thinking about how to develop others to step into that space. Especially where people have lived experience of the issue that’s under question. It’s so important to have those voices to being heard.

RP: Yeah, absolutely.

People with intellectual disability as campaign leaders

HH: Earlier on, you said something you really enjoy about working with people with intellectual disability is that they come up with different ways of doing things and surprising and creative responses. Can you share some examples of that?

RP: Things like when we’re doing logo development, messaging development and framing development. We do some initial work, and then take it to our advocacy group, which is about 12 to 15 people, and we workshop that with them and get their feedback and their ideas. In a recent campaign that we were running on disability inclusion we had come up with ‘Don’t Lock Us Out’ or ‘It’s Not Optional’ for the campaign title. We thought it would really resonate with our members with intellectual disability. In fact, they totally rejected both of them, for good reason. ‘It’s Not Optional’ they felt could be misinterpreted and they gave a lot of good reasons which are perfectly valid and I said ‘yes, actually, you’re totally right, we shouldn’t shouldn’t use that one’. And then ‘Don’t Lock Us Out’, it’s ‘Why do you have to be so negative? We want to be positive, we don’t want to be negative’. They said ‘More people will like the campaign if you make it a positive campaign’.

So we had another option, which was ‘Everyday for Everyone’. And they said ‘That’s the one we like, it’s positive, it’s saying what we want. We want to be the same as everyone else. We want every day to be the same. And we want to be part of everyone, with everyone’. So they totally nailed it. But they also said ‘You have to go a step further. Because you haven’t said about inclusion, you need to put inclusion in there’. I said, ‘Okay, so how would you do that?’ and they said, ‘Well, what about you say, Everyday for Everyone, Make Inclusion Happen, or Make Disability Inclusion Happen?’. I said ‘Yeah, that’s really good. Okay, we’ll do that’. So that became our tagline, and we developed all our material based on that. It was their insight into what works. While they were looking at it from an intellectual disability perspective, I think they actually captured a universal truth which was beyond intellectual disability, because they actually made it more accessible for everybody and more appealing as well. It was a really great way for them to be part of that process and for us to come out with a better outcome than we would have.

HH: At the Commons Library we’re early days in our journey with Easy Read. But as we’ve been translating different campaign resources, we’ve found trying to go for the most simple and clear way of communicating the information, and to find the images that match up with it, is a great discipline that would help communication in lots of ways. Thinking about what makes things inclusive for people with intellectual disabilities extends to inclusion for others as well. In terms of coming up with a name of an advocacy campaign, to take out words that are confusing, and find the words that are clear. While also managing to encapsulate the values and the vision of the campaign in the title. It’s a great achievement.

RP: In that particular campaign, we’re talking about putting all important documents into Easy Read. Our website has Easy Read and non-Easy Read versions, and we have every document available in both forms. The whole campaign is completely accessible. We certainly keep language as accessible as possible, in everything that we’re doing, and do a lot of the other work that you need to do in terms of accessibility for websites and for communications, in terms of colours and things like that.

Being an ally to people with intellectual disability

HH: What do you think makes a good ally to people with intellectual disability? If people who are involved in other campaigns or in their community are going to have contact with people with intellectual disability, are there good approaches to how to work together?

RP: How to work effectively with a person with intellectual disability? Value them, listen to them, treat them (if they’re your work colleague) exactly the way that you would treat any other work colleague. That’s exactly what they want as well. They are our equals and we need to absolutely be authentic with them, just as we are with all our other work colleagues.

Acknowledge as well, though, where there is more support needed. With different people that I work with, who have intellectual disability, they will have different needs. For example, that it’s quite difficult for some people to remember things. So as a general rule, if we’ve got a meeting or workshop upcoming, we will do a lot more reminders to make sure that they know, including one on the day, when we just remind them again of the place and the time. Some people may have difficulty orienting themselves. For example, they might arrive at Central Station and forget or just be disoriented about how they get from Central Station to the office. So we would plan that into things so that we’ve got one person on standby, who can go down to Central Station if needed, and walk with somebody up to the office, if they’re feeling a bit disoriented. When we’re doing work presentations, everything like that, we always use Easy Read.

Transport campaigning

RP: We’re doing a lot of campaigning at the moment on transport for people with intellectual disability. In fact, we have for many years done a lot of campaigning in that space. Because there’s a lot of issues. Wayfinding is an issue. Signage is an issue, in terms of it being easy for people to see signs and know what that sign means, or to see directions and know where to go. Timetables are very hard to read. 24 hour timetables are very hard to read, definitely the preference is for 12 hour timetables not 24 hour timetables. Directions are hard to read – it’s really important that it’s a very open and clear and large font. It’s amazing how bad communications are on public transport. For example, when you get an announcement that a train is delayed. You don’t focus on it until you actually really listen to it because one of your colleagues with intellectual disability has pointed out to you it’s gobbedly gook! What’s that about? I mean, the verboseness of the language and the inaccessibility of the language for a lot of people is ridiculous when you can say things so much more clearly. It’ll help everybody to understand better what is actually going on and what the solution is. So, really, honing in on what is accessible language and what’s not accessible language and, and making sure that you’re on the right side of that.

I was just talking to one of our project workers, all our project workers have an intellectual disability. We were talking about the problems with abuse in the wider community for people with intellectual disability. So often, their disability is interpreted as a behavioural thing, that they are deliberately mocking or that there’s some substance they’ve consumed, which has made them speak in a particular way. Or the fact that they need to ask questions that maybe other people might not need to ask, is seen as annoying people. They get really, really nasty responses, often from transport officials and people in the wider community, all of whom should know better, but quite often don’t. That need for raising awareness is absolutely huge still.

The problem has been intensified because of the amount of privatisation that’s happening in transport as well. There hasn’t been a carry over of the need to do disability awareness training, for a lot of the privatised taxi services, and all the different brands out there. They’re not doing any disability awareness training, but they’re happily refusing to give lifts to people with intellectual disability because they see them as being a little bit different and they don’t want to risk it. Even if they’ve called the taxi, they’ll just drive off. I’ve heard terrible stories about privatised buses in terms of the way people with intellectual disability have been treated, where clearly that staff have had no training at all in disability awareness. It’s a huge problem.

HH: It’s a worrying example of the intersections between different systemic factors: the movement towards privatisation, that reduction in the amount of training that those workers are getting access to, and how it directly impacts on people with intellectual disability. It’s not really there in the conversation so much around privatisation, but there’d be so many of those examples.

RP: It makes me cry internally when I hear some of these stories. One of our members was telling me how she was abused by a taxi driver, told that she’s stupid, ‘Wake up and don’t ask stupid questions’. And then when she says, ‘I have an intellectual disability’, it’s ‘What are you doing out on your own, you need to have somebody with you, you shouldn’t be allowed to go out on your own’. Just for asking a question to know how to go. Really aggressive, abusive behaviour.

There’s other examples: this is not a person with intellectual disability, but actually one of my neighbours who is in a wheelchair and has muscular dystrophy. She was telling me that she’s having terrible trouble getting buses. They’re all privatised around us. The buses will stop and the driver will see her in a wheelchair and say, ‘Oh, I haven’t had any training using the lift. So you’ll just have to wait until you find a bus driver who’s had some training’, and they’ll drive off and leave her on the side of the road. Sometimes she has to wait for two or three buses, before the person will actually work the lift so that she can get onto the bus. You know, the most incredible disrespect for a person with a disability. This has been perpetuated by companies that must think it’s okay for their staff to behave this way and to not prioritise that the staff be trained.

The power of people with disability in campaigns

HH: Are there any last things that you want to say or messages that you want to give to other campaigners?

RP: Campaigning is a very rewarding space to work in.

We are continually moving into a digital space with a lot of our campaigning. But often the really powerful parts of campaigns are those face-to-face elements. The rawness of face-to-face is really impactful.

We get that when our members and supporters go and visit their local MPs. I do a lot of training on lobbying your local MP, with a lot of roleplay sessions so that when you go, you’ll feel that you know what you’re doing. I know one of our members who lives down in Wollongong has visited a Labour MP quite regularly who’s now fortunately a minister. He’s saying how great it is that he now feels like he knows the MP really well, he can go and talk to him about any issue that is concerning, and the MP really listens to him as well.

To have gone from not having any engagement at all with your MP to knowing that you can phone him up, make a meeting time, and that the MP is happy to meet with him as well, and listen to what his issues are, and will try and address them. I mean, how empowering is that, particularly if you’re someone with an intellectual disability, to know that you’ve got those rights in society to be able to do that. It is such a win, as far as I’m concerned, in the work that we do at CID, to know that we’ve empowered a whole lot of our members to be able to do that. That’s such a powerful way to be able to engage with politicians and to affect change.

HH: That’s such a powerful story to finish on. It was also making me think about an interview I did with Elly Desmarchelier recently. She was talking about the power of people with disability on the campaign trail, because sometimes it’s quite disarming for a politician, or another kind of target, or even somebody on a doorknock. Sometimes they can be more receptive or open to a person with disability.

RP: I’ll finish with one other little anecdote. I was part of the core committee organising the Stand By Me campaign, which was a big campaign to secure disability advocacy funding, when the government of the day decided to remove all funding, and close all the disability advocacy organisations down, including CID. We’d got to a very good stage of the campaign. We’d done a lot of lobbying, we had lots of very impactful rallies, not just in metropolitan Sydney, but right around New South Wales. Then we were going to do a big forum in Parliament House. We were going to do the forum, go to question time, and we had all of the friendly MPs lined up to do questions on disability advocacy funding. I said, ‘We’re going to get everybody into the Parliament House!’ So I’m ringing up the people who organise that, saying ‘So I’ve got another two people with wheelchairs coming… I’ve got another three people’, it was getting to about 15 people with wheelchairs coming. I said that I’ve already got 50 people up in the gallery and, and they said ‘How many people are coming? They keep RSVPing!’

I think that that might have been what turned it because we literally got to the stage where they said we can’t accommodate anymore wheelchairs, we can’t do it. I said, ‘They’re coming. They’re just gonna be there because I can’t tell them not to come, they’re all coming.’ The night before that was going to happen we got the phone call, ‘Okay, you’ve got the money. We’re going to fund you’. So instead, the next day, we ran a celebratory forum with all of the MPs, including the ones that had changed their mind. They’re in the photo, to celebrate the fact that the disability advocacy funding had been reinstated. I think they realised that Parliament was going be packed out with all of these people from the disability community. Obviously, the media would have been informed that they were all going to be there as well which would have been a very, very powerful image to deal with.

HH: That’s excellent. Thanks Rochelle, it’s been so good to talk campaigning with you.

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Author: Holly Hammond, Rochelle Porteous
Organisation: Council for Intellectual Disability
Location: Australia
Release Date: 2023

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