Carly Findlay delivers a masterclass on social media and disability advocacy Disability Ageing and Carers

Carly Findlay delivers a masterclass on social media and disability advocacy

How to be an awesome disability advocate online.

This event featuring writer and appearence activist Carly Findlay was organised by VCOSS as part of the Empowered Lives campaign.

Empowered Lives brings together people with disability, advocates, and organisations in the disability community.

Together, we have developed a platform for change; outlining the key issues that face Victorians with disability in their interactions with the Victorian Government systems.




Please check against recording before quoting or reproducing.


So I’m Carly, I’ll be talking to you today about social media.

Firstly, thank you to VCOSS for having me.

I just tweeted that you know how to make a girl feel welcomed because not only was there cheese, but there was Savage Garden playing.

And if you know me, you’ll know my love for Darren Hayes knows no bounds.

It’s been 22 years now, 23, actually, and this will be on my rider from now.

Sorry, I’m talking to you about social media today.

We’ll go through the presentation and then we’ll have time for questions.

I’m guessing most of you have got smartphones or are on social media, yeah.

Is there anyone that’s not.

Oh, okay, I might give you a private lesson afterwards in setting up an account if you’d like.

Is my preso up.

Am I going backwards.


The white one.

Great, okay, so, why social media.

A lot of people think that social media is just for cat videos and selfies.

It is, but there’s so much more to it and for me, it’s been a really great way to connect with people to make friends.

I’ve got a social media friend in the room today, Isabelle, we chatted last about mac and cheese.

So not only do we talk about important things, but we talk about food.

She doesn’t agree with my distaste for mac and cheese balls, which is just controversy.

But I think it’s a really important way to connect people and also to keep up with what’s happening in the world.

So what’s in it for you if you join social media or if you’re on social media.

You can learn things, you can keep up with the news.

I love to log on Twitter, well, sometimes.

I love to log onto Twitter and just see what’s happened overnight because I think it’s a really good summary of what’s happening.

You can make friends, you can also make business connections and I think that’s a really important thing to be on Twitter both as a business and also as an individual in your business, or as a individual sole worker.

You can find different opinions.

This can sometimes be tricky.

I find that my social media, particularly around the election, showed me that my world is very much left kind, not Trump supporter, not Scott Morrison supporter.

But then when the election happened, I realized that I am in that social media bubble and probably need to look outside of it a bit more ’cause I was not expecting that result.

And yeah, as the next point says, you can get outside of your bubble and I think today, when I got this brief, Deb Fewster said that she would really like me to talk about how you can find other people to connect with, ’cause you all work in the disability space, and it’s really important that you’re following actually disabled people.

So I’ve got a number of people you can follow today, and you can chat about TV shows as well.

I think when I look on Twitter and see what’s trending around the 7:30 to 10:30 time slot, most of it is around TV shows and I think that it’s amazing how social media has become that third screen, or second screen, that we not only watch TV but we are discussing it on Twitter, or on Facebook as it happens.

And that’s a really great community-building thing, also really great to build, to give feedback to those stations.

When I was doing this, I looked up a lot of memes.

The meme looking-up took longer than the writing the content.

So there’s not a meme for every page, I’m sorry, ’cause that would have been ridiculous.

But I think the social media friend that you’ve never met but means a lot to you, I think that’s really poignant because there’s so many people that I know on social media who I have never met IRL, in real life.

I met someone yesterday, actually, when I was in Sydney.

I don’t know if you follow @brocklesnitch but she’s a really great comedy writer and I met her.

I think due to her comedy writing on Twitter, she’s now become a TV comedy writer and that’s a really great, a great thing, and for me, social media has built so many business opportunities.

I don’t think I’d be doing the work I did without it, I’d do, rather, without it.

I took ages to find this meme of Stevie Nicks.

I spend about a good half an hour Googling Fleetwood Mac memes because I waned to make a point that when people hear about social media, or make a decision to go on social media, they think that they have to be everywhere, and that’s not the case, you don’t have to be everywhere.

You can choose one or two platforms and do them really well.

So options for you are a Facebook page that’s public or your own and you can make public Facebook posts.

So if you have a personal page, you can make your posts public or if you have a business page where it’s outward-facing, you can choose to use that.

You can have Twitter, Instagram, LinkedIn, YouTube.

You can make a podcast, or a blog, and I’m sure there’s other social media platforms that I’m not aware of because I’m too old now.

But those are the things that you can choose to do.

I think if you’re on more than three, it’s probably quite time consuming and it is hard to do it well.

So if you’re just starting out, choose one.

If you’re intermediate, choose two or more and try to do them well.

I have a public Facebook page as well as a personal one.

I have Twitter, Instagram, I have LinkedIn.

Sometimes use YouTube, I have a podcast, and I have a blog.

I probably do the Facebook, Twitter, and Instagram really well, and the rest are a bit neglected.

Before you set out to do your social media, or even if you currently use it but are rethinking your strategy, think about your why.

And this Gene Wilder meme, I think it’s a really good one to make you realize that a social media strategy isn’t just for a business.

A social media strategy is for an individual or it’s for a small grassroots-run group, even just a Facebook group.

And a social media strategy doesn’t necessarily have to be that big.

I used to write social media strategies when I worked for the government and I have my own as well.

I mean, it’s not written down for my personal brand, if you must, but I do have a bit of a strategy with my social media.

So think about what are your values, what do you want to get across on your social media.

Think about what your messages are.

Do you wanna talk about yourself or do you wanna talk about the wider communities.

You wanna talk about the work you’re doing.

Do you want to make a really positive difference to the world.

Think about your goals.

For me, I’ve definitely used social media to develop an audience, and I just published a book this year, or HarperCollins published it, and one of the things that they were impressed with was my social media following, that I had that to bring with me so they did not have to build that from scratch.

So you can develop an audience, you can connect with the sector, you can connect with the disability community and that’s really important for you as workers in the community.

You can do advocacy and activism, you can build your own community.

I just spoke to someone before who runs a Facebook group and I think that’s a really great community to have, Facebook groups are excellent in connection and resource building, and you can share information and knowledge.

So firstly, you can set up your accounts.

My favorite movie of all time is Clueless.

So think of setting up your social media accounts as a project.

So firstly, you can write your bio and it doesn’t have to be huge, it just has to be a short, or however long your social media platform allows, actually, because I think on Twitter and Instagram, it’s about 140 characters.

In your bio, state what you do, state what you enjoy, and have a link to your work, if you’ve got a website.

On my Twitter bio, I think last week, I changed it last week, but I just had, “I write books and I like cheese.” But this week, I’ve change it something a bit more sensible.

You can take a picture and I think that you should take a number of pictures for social media, just take one that’s a headshot, a professional if you want to, take a full-body shot, and a fun one as well.

You can just set your phone up and do it.

It doesn’t have to be a complicated thing.

Familiarize yourself with your employer’s social media policy.

I think that’s a really important thing.

If you work for someone, if you work for a company, know what their policy is on social media.

What are you allowed to say about the sector that you work in.

What are you allowed to say about yourself.

I used to work for the government, I used to work for the government, the federal government for 15 years, and it was really hard to be on social media and work for the government at the same time.

But having done that, I think it’s really set my values for the way I work on social media.

So I had to keep it very separate.

I never mentioned where I worked when I worked for the government, I never mentioned that on social media.

I would never talk about tax policy ’cause I worked for the Tax Office, I knew nothing of tax policy anyway, so, I didn’t have any reason to.

But I also had to be really careful on commenting around when there was job cuts and then disability issues, and in the end I left because I found the conflict, one of the reasons I left was because I found that really hard.

I found it hard to balance, I found it hard to be me, and to be government me.

So familiarize yourself with the policy before you start posting things because it could get you into trouble.

I work for Melbourne Fringe now and they want me to post about work, work at Melbourne Fringe, on my social media account and then they will mention my social media account on theirs and it all become a bit blurry, and it’s a bit tricky.

But I feel that as long as I am representing the company well on my own account, it’s okay.

If you’re using social media to post about work-related things, talk to them about potential conflict of interest as well.

So I used to, when I worked for the government, and I would write for the media, I would have to tell them every time that I was to have an article published, or an article was published about me, even that wasn’t related to tax, I’d still have to tell them.

If you work for VCOSS, for example, and you’re wanting to comment on government policy, as yourself on social media, tell your boss that you’re going to do that.

I mean, I don’t know the VCOSS social media policy but I’m sure it would be okay, but just flag it with someone just in case.

I think that’s really important to tell work what you’re doing, if it’s about work-related things.

If you’re using social media to post your brunch photos, you can tell me, I’m always hungry.

I think it’s really great to mix it up a bit on social media and it doesn’t always have to be policy, it doesn’t always have to be brunch photos.

It can be a mixture of both because it really allows people to get to know the real you.

Plan your first post, if you haven’t set up social media yet or if you’re wanting to change the direction you’re going, come up with a few posts before you start.

You don’t have to post them in real time.

And start following interesting people, I’m gonna name a few in a second.

When you plan your first post, plan a mixture of them.

And I’ll talk about this I think in the next slide around how often you should post.

So, you don’t have to post on social media everyday but I do recommend that you don’t go for months without posting, you don’t set up with gusto and then suddenly fizzle out because people come to expect what you post.

How much time do you have.

Do you have time to respond to comments.

Do you have time to build a community.

If you’re only starting out or changing direction, I suggest maybe three times a week posting on social media.

This is my simple social media strategy.

You can draw up a really simple grid.

So with the days of the week, think about what you wanna post.

So your own content on Monday, share content, someone’s news article that’s related to the messages or values that you have.

On Wednesday, set aside some time to reply to the comments you received.

On Thursday, you can post your own content.

On Friday, share someone else’s content.

On Saturday, something fun, and on Sunday it can be a rest day.

It might be that you post nothing, or it might be that you post something about how you rela.

XSo a book you’re reading, or place you’ve gone to visit.

I think that’s a really easy start and not very overwhelming.

Of course you don’t have to post everyday and if you have more time, you can post more than once a day.

One of the things I really felt helpful to build an audience is to share people’s content, share other people’s content more than I share my own.

So really amplify people’s voices and, show that I am listening to what else is happening in the sector, in the community, and also showing my audience different points of view, different perspectives.

So as an example of this, in the disability community, there’s often a lot of conflict around how we use language.

So I call myself a disabled woman, disabled person, and a lot of other people call themselves a person with disability.

And I call myself a disabled person because I see disability as part of my identity.

I don’t call myself a woman with heterosexuality, for example, because it can’t be removed.

I can’t put that aspect of identity down.

So I say disabled people, disabled person, and so many others do.

But there are other people that say people with disability.

So in sharing on my social media, I sometimes share a wide range of articles around this topic around language so that people who follow me, who might not necessarily me disabled, can get that perspective so it’s not just me giving my own perspective.

So if you are talking around community services or government work, share lots of stuff from lots of different perspectives to give your audience a balanced view and that will help them get out of their bubble as well.

And yeah, as I said, be really generous.

Reply to comments and tweets when you can, even if it’s just hitting a like.

I think my busy schedule now means that I can’t reply to everything, but I will try and like or put a heart, or respond where I can.

Share others’ work more than you share your own.

So many people write to me, particularly in a disability community, and they wanna use my profile to leverage theirs, and sometimes I don’t mind, but if I’ve never interacted with them before, that’s not the first tweet or message I would like to receive.

I don’t wanna see, here, oh, Carly, can you share my page, if they’ve never interacted with me before.

So it’ll be really great if you set an example by sharing other people’s work and also thanking people when they share your work.

If someone does a little review of my book, I always say thank you or hit Share on Instagram Stories or something, and show them that I appreciate them.

Don’t say anything privately that you don’t wanna make public.

I have a very good example of this and some people might disagree with my approach and that’s okay.

But I really like this meme from Clueless, “Would you call me selfish?” “No, not to your face.” I had an example this week and you might have seen it on my own social media where a person who booked me to speak last year used the R word in a Facebook post on her personal Facebook.

And the speech that I did was at the Women’s March in Melbourne in 2018 and I talked a lot about how the language that progressive people, people in my circles, use, particularly around Donald Trump, they use disability slurs when talking about him, does not show that they’re inclusive, does not show that they’re good allies.

And she used this word on her Facebook page and I wrote about it, and I called Women’s March Melbourne out and I said, she doesn’t work there anymore but, I said this is how I know this woman, through Women’s March Melbourne, and I gave this speech and I talked about ableist slurs, yet, she’s using them and I didn’t feel valued.

And maybe that wasn’t the right thing for me to do but it was an example of how she has said something which absolutely contradicted the values of her previous organization and the work that I did for that organization.

So I think that that’s really important as well.

Know that what you might say on social media could end up in another place.

I didn’t name that person, I named the organization, I was very careful of that because I was aware of the power imbalance between us.

So I didn’t wanna pile on, but I wanted, I guess I wanted the organization, which claims to be progressive and inclusive, to be somewhat accountable.

Be consistent, be consistent with your posting.

So as I said before, if you start off with gusto with your social media and then fizzle out, then you’re probably not gonna gain momentum six months later.

So be consistent when you post.

Stick to that strategy that I showed you before.

Be consistent with your values and your timing.

It is okay to change your mind and you should own it and apologize when you make a mistake.

So if I’ve shared something that might contain ableist language, but I think it’s important to share because of the message, I will state that there’s a, put a content warning that there’s ableist language in there or if someone pulls me up on…

Writing gender-specific language rather than gender-neutral language, I often will go back and edit my post and apologize and thank that person for pointing that out, that I haven’t done that.

So if you do make a mistake or hurt someone inadvertently, own that and apologize and often, that can really have a good impact on how you’re then seen on social media because if you stay silent, then people will judge you for that, and it can be tricky.

Make your social media accessible.

So, you never know who’s reading your social media and I’m guessing your audiences will be disabled people.

So you can start making your social media accessible by describing your images, and there’s a link in how to do it.

You can get this presentation afterwards or get Deborah to email it to everyone.

You can caption your videos, you can provide transcripts because you never know who your audience is and these are really simple ways to do it.

I caption, I would say, almost all of my social media content now.

If I put a photo on Instagram, I will caption it in the text or in the first comment if there’s not enough space.

I will use the Twitter alt text function which are on my phone, or on your phone, when you upload a picture, there’s a little button you can press on the picture.

And you can do an image description, and I’ll do an image description now to show you.

I also, when I do videos, I haven’t yet captioned all of my videos just due to time, but I plan to.

I’ve got a few videos of my book launch and I’m going to pay people to do that because it’s really important so that people can see what’s being said.

An image description doesn’t have to be hard.

It can be, I’ll describe who I am, how I’m sitting here.

So woman with red face and short, dark, curly hair, sitting on a stage, she’s a wearing a navy floral dress and holding a cup of tea, a microphone’s in front of her.

The chair is blue, there is an Auslan interpreter to her right.

So that can be as simple as that and there are examples on that blog post that I wrote, if you want.

That means that people who are blind that use screen readers or people who have sensory impairments can use that.

One of the things that I stress is that it doesn’t have to be just about disability content to make your social media accessible.

You should make your social media accessible no matter what content it is because you never know who your audience might be.

Cal Wilson, a comedian, does really great image descriptions, there’s always humor in them, and Uncanny Annie, I think she might have done it through the Instagram alt text, but she does some really great ones as well.

And those two people don’t identify as disabled but still make it accessible for people.

I wanna talk about selfies now and a lot of people think that selfies are vain and a bit conceited, a bit superfluous, but I think they’re really important.

I think they’re really important in marginalized communities and I’m gonna show you something, a bit of my work.

This isn’t a selfie but I wanna talk about how selfies don’t always equal vanity or pictures of yourself on social media don’t always equal vanity.

They’re also about visibility and representation.

So I post a lot of photos of me online and it took many years to do that.

I didn’t wanna post a photo of me online until I was about, I don’t know, 25, because I thought that it would be misused because people like me end up on Reddit, and I have ended up on Reddit.

People make fun of people with visible differences.

And then I chose to put myself online because I was in control of my photo and I think for me, the most important reason I put my photo online is so that people can see what’s possible.

People with ichthyosis, the skin condition I have, and people with disability and facial differences can see other people like them and can see that it’s okay for them to put themselves online.

I did a talk to a bunch of scientists, Women in Science, a few months ago, and they were encouraged to build social media platforms.

And a lot of them were really scared about selfies because they thought that it represented vanity.

But I said, “I think it’s important “for young women to see women like you in the science “and technology field, in leadership positions.” And a lot of them went out of that conference that day and did a selfie because of what I said.

I wrote about how, in this post on Instagram, how I want defiant representation.

So it’s expected that people with visible differences, with disabilities, with facial differences, with skin conditions don’t want to be seen and wanna hide or want to be airbrushed or change the way they look.

But for me it’s very important that we look natural on social media, that we look happy and confident.

I mean, you can certainly take a sad picture if you want.

But my brand, I guess, is to look confident because I want young people with ichthyosis to know that it is okay to be seen and it is okay to celebrate themselves on social media.

I did a segment on The Project earlier this year and my friend, Chaz, he’s four, and he has ichthyosis, the same condition as I have, and his mum put this amazing photo of him up of watching The Project, he was watching The Project and he said, “That’s my friend, Carly.

“She has the same skin as me.” So that meant a lot to me through being visible and when I was little I didn’t have that and now children can see that.

One of the other requests, so I was joking that I now have a rider, I guess, when I do speeches, so you know, the Savage Garden music and the cheese, only purple M&Ms, not really.

But one of the other requests I have is when people ask me if they can take a selfie with me at a work event, I often talk about the importance of appearance diversity and loving your appearance the way it is.

And so many people use a weird filter that make them look like a chipmunk, or airbrushed, or something, and I don’t want that when they come and take a selfie of me, because I’m not about that, I’m about looking my authentic self, and I don’t wanna change.

So if they come up and ask for a selfie, I will say, “Can we not use a filter?” So about echo chambers, I like this meme,”My echo chamber means I’m right.” And I talked a lot about that before that through social media we get to build our own community which is great, but it means that we only hear what we want to hear, we only hear opinions that we tend to agree with, and I have blocked a whole bunch of people from the right because I don’t really like what they have to say.

But sometimes it’s important for us to hear that so we can make positive change and we can know what to expect when an election happens like it did.

So, I’m gonna list now a bunch of people that I think that you should follow so that you can get out of that echo chamber.

I don’t know what side of the fence they rode on but they’re all actually disabled people doing really great things.

And if you follow these people, you can follow more people they often share other people’s work.

So Ariel Henley is an American woman who is on Twitter, and on Facebook, and Instagram.

She wrote this amazing article, she writes a lot for American publications and she just got a book deal.

She’s got a facial difference and she and I get along very well because we both understand what it’s like to have a facial difference and be stared at.

Ariel does really great work in representation for young people and again, isn’t afraid to put a selfie up.

So you can search her name on Twitter, or Instagram, or Facebook.

El Gibbs, El is an amazing person to follow because she shares so much policy stuff around disability.

This is her Twitter, she shares other people’s work and lots of articles, and also her own opinions.

El works with People with Disability Australia.

Alice Wong, Alice runs the Disability Visibility Project which is an incredible resource.

Alice is a disabled woman from San Francisco and she curates a lot of disability-lead media.

She used to run a Facebook group, which is still there, but it’s no longer active.

But you can go and have a look ’cause it’s all public.

But in the Facebook, she would share articles by disabled people, the podcast is incredible.

Alice has a respirator and I think it’s really important to hear her voice because we don’t often hear different voices like Alice’s online or in the media.

Alice’s Twitter is excellent as well, so do search her on Twitter.

Imani Barbarin, I really wanna play this video.

Have we got capacity to play this video.

Imani is an incredible woman who creates these really great hashtags.

This one was #AbledsAreWeird to show the silly things that non-disabled people say.

And she just, I think she said started on last week, called #WhenICallMyselfDisabled.

She really creates great community through hashtags and if we get this video running, we can play it, oh, yeah.

Great, and it’s captioned.

I think you just can hit the Play button, thank you.

– Disabled people about what they want for the their bodies, ask for permission, ask for consent.

I started the hashtag mainly because I was really reflecting on some of the weird experiences that I’ve had a disabled person.

I just remember feeling off put by some of the behavior able-bodied people had towards me.

There’s a lot of disrespect of disabled people’s autonomy under the guise of, oh, I’m just trying to help.

And it allows people to believe that disabled people can’t consent to what they want for their bodies.

Social media and hashtags give us the ability to create the representation where there is none, where there’s no nuance, where there’s no ability to say this is what my reality looks like and here’s how I want you to change because of it.

You should be respecting disabled people’s bodies.

You should be respecting their voices and you should be making yourself an ally rather than a hindrance to disabled people’s lives.

I see you, I understand what you’re going through, and there are thousands of other disabled people who have participated in this hashtag who feel and have experienced the same things and you’re not alone.

– Thank you.

I think Imani’s hashtags really show the power of community because through a simple hashtag, I think her last one was #DisabledCompliments, actually, and we were encouraged to share all the kinds of compliments non-disabled people give us, and they’re quite funny, but also hideous at the same time.

But they create this real big sense of community and they allow us to follow other people who we might not see without the hashtag.

So if you see Imani’s hashtags and generally they’ve been going viral every two weeks now, so she’s incredible at that, do follow those and see what people are saying.

Claudia Forsberg, Claudia is a young Melbourne woman, I think she’s 19, and she is, her first year at RMIT is this year.

She wrote this amazing post around how isolated she felt at university and through her blog, she demonstrated the ableism that she faces.

And that, I think it was me that tagged in someone from RMIT or shared it on my page and someone from RMIT who works there found it.

And she had a meeting with the staff then and then she gave a talk to her class, or her fellow students, and she feels much more included now because of that blog, and her work, she’s quite young and she’s quite new to the writing in disability scene, but her work is incredible, so you should follow her.

Kaitlyn Plyley, Kaitlyn is on Twitter, and Instagram, and she runs a podcast, although it might not be that regular anymore, called Just A Spoonful, and she talks to young people who have chronic illnesses and she’s a really incredible woman.

She’s writing her first book as well at the moment.

Michelle Roger, Michelle made this Instagram post which had the words, “If you can’t see it, create it,” and that’s often the case of disabled people.

Michelle is a woman in her ’40s who developed a disability when she was in her ’30s, and she writes a lot about fashion.

She writes a lot about the idea of being up and dressed, she started the #UpAndDressed hashtag, and that meant that when she feels at her worst, she puts on a great outfit, it could be a ballgown, or it could be her pajamas, and she feels better wearing presentable clothes.

Michelle took part in a project I did last year, Access To Fashion, which was supported by VCOSS and FSSI as well, and she was one of the models and speakers at Access to Fashion, which was a part of Melbourne Fashion Week.

Michelle’s on Instagram as @michelle_roger and Twitter as @RustyHoe.

Briana and Bella in Accessible Brisbane, they’re amazing.

Briana and her sister, Bella, talk about accessible places in Brisbane and also address ableism and inaccessibility and you can read the slide in your own time when you receive the PowerPoint.

But this summarizes how ableist people, strangers, can be.

They do some great photos of travel in Brisbane and outside and I met them last week when I was in Brisbane last Friday and it was really funny because I had a big hotel room because I was staying in for work and someone brought a cake, another friend brought a cake.

And we weren’t allowed to have the cake at the restaurant so I said, “Come back to the hotel and have a cake.” And the woman, a woman who made the cake said she’s wanting to start a festival, a cake festival.

And she says, “Can anyone help me with access?” And there were five of us in there that could help her with access, so we filmed this really funny video of us all clamoring to help with access.

They do some really great stuff, Briana and Bella do some really great stuff around serious impairment.

So I think it’s important to see all types of disability represented and they’re a great start.

Camille Condon, Camille Condon was my best friend and she died this year, and she used Twitter and Instagram to show that she lived a really, really full life.

She had a lung transplant in 2013 and she wrote a lot about what it was like to be on the waiting list for a transplant before she had it.

She also wrote a lot about dispelling the myths of having a transplant, so I think the media around transplants is that life is amazing after a transplant, but for her, life was really hard, and she was diagnoses with cancer earlier this year and she used her Twitter to educate people around what it was like to live with a terminal illness as a young person.

And I really like this, this series of tweets from her before she died.

She had a real hard time finding great support when she was diagnosed, even though she was a long-term patient, and I asked her when she got diagnosed if she was gonna write a book, and she says, “God no,” she’s heard how awful it was for me to write a book, she wasn’t gonna spend her last three months doing that.

But she said her Twitter and Instagram were journals for her and that she could educate doctors in hearing real-life patient experiences.

When she was told she hadn’t got long to live, I did a call out for videos for her and all sorts of people put videos together.

She had videos from Hilltop Hoods and some INXS members.

But one of the videos was from a doctor and he said that she taught him more on her social media than any of his patients ever.

So, even though she’s gone, her Twitter and Instagram is still present, so do follow her.

I got asked to talk a bit about engaging with disabled people online and it can be quite tricky sometimes because often we’re really angry.

And I’m not going to apologize for that but it can be hard for sometimes for non-disabled people to understand our boundaries.

So the other day, as I said, I wrote about this woman who said the R word, but I didn’t say the R word, I’m not going to, because that would perpetuate the ableism further.

A number of people messaged me privately to say, “Carly, what’s the R word?” And I said I’m not gonna spell that out, you can google it.

And they got really angry at me for setting these boundaries and so it was on me again to provide them emotional labor and so often we’re expected to relive that kind of ableism that we write about or we speak about or we endure.

When I write about ableism I receive, say, when a taxi driver refuses to take me, as happened last week, I get a second re-level of ableism when I write about that.

So I not only have the taxi driver experience when he says my face will damage his car, but when I write about it online, I get people play devil’s advocate.

I get people say, oh, he didn’t understand or this condition’s really rare, of course he was scared, or of course he didn’t want your face in the car, or, maybe he’s new to the country, I get that.

So that’s like a second re-level of ableism, so I ask all of you just to take a step back and examine your privilege and listen, really listen to what we’re saying and don’t justify it in any way.

Amplify voices, I was talking at work yesterday or the day before about the taxi incident.

And someone asked me to explain it more and I actually got a bit frustrated and I said, “I’m really sorry, “but I’ve written about it already, “I don’t wanna have to talk about it.” And they said, “Did anyone help you with this “when you wrote about it on social media?” I said, “Not really,” I said, it got shared a little bit, but it’s really important for me not to be the only one doing the work.

So it’s important for me to know that allies will step up and share these experiences that we write about.

When I had my briefing meeting with Deb, I told her what happened ’cause it happened, the taxi thing happened the day before that I think, and she said, “Is there anything VCOSS can do?” So when I have some time, I’ll meet with VCOSS and see how you can be really great allies around the taxi space.

Again, don’t play devil’s advocate and lots of people are very well-meaning but it can be really hard to experience that secondary level of ableism.

Don’t expect emotional labor from us and that means that so many things that we write about or don’t necessarily need a explanation or you can Google it.

And I’m not saying you all do that but in my experience it can be sometimes tricky when a well-meaning, non-disabled person comes in and says, “How can we help?” Or, “Tell me more about that.” But we’ve often written about it or spoken about it many, many times.

I’m really glad now I have a book for people so when they ask me, “What does ichthyosis mean?” Or, “How can I stop my child from having a tantrum “when they see people like you,” I can say, I’ve written a book, and here, read it, buy it.

So, it can be really, yeah, really tricky, and sometimes people get really uncomfortable because of their privilege or because they feel called out.

But it’s also really important to listen.

An example for me, I got really excited when Prince Harry and Meghan were in Australia because I love what Meghan Markle wears and I shared a lot on my Instagram, on my Instagram Stories.

And I had an Aboriginal friend message me and say, “I really like your work, Carly, “but I’m uncomfortable with you sharing stuff “about the Royal Family because for me, “it reminds me of colonization.” And I said, “Thank you so much for telling me.” I read up a bit more about it and I haven’t shared anything about Meghan and Harry since because I listened to them and I heard how what behavior was hurting them.

So, I guess that’s an example of when I’ve been called in or out and what I did with that information, instead of putting more emotional labor on them, I did the work after that and decided to no longer share stuff about them.

I also got asked to talk about trolling.

So you’ve been trolled, and you know what.

I think trolling happens to everyone and it can happen in a way where you’re called out, like the example I gave before, or it can happen in a malicious way, or unnecessary way.

So there are a few options, you can ignore trolls, you can block them.

I always take screenshots now, you can out them.

I often out my trolls because I feel that it shows people who they really are.

It lets people see, especially if they put their name to them, and a number of people I follow do this as well.

It shows what we endure, we don’t have to keep it secret, the idea that a problem shared is a problem halved.

If I write about my trolls, it can show that I’m not alone receiving those messages privately.

You can tell the eSafety Commissioner, there’s a report form for trolling or for online abuse on there, you can tell the police.

I tend to find that those two options aren’t that effective.

I find that sharing it with my own community is better.

I’ve been, had death and rape threats online and the police didn’t know what to do.

So outing them has been far more effective than telling them, but it might work for you and it certainly might work for organizations as well.

I know that organizations who work in the social justice space receive a lot of trolling and so it’s really important to provide great support to your staff and let them know that perhaps the EAP or the eSafety Commissioner is available if needed.

The other thing that I didn’t mention on here is that if trolling persists in a harassing way, you can go to court if you know who your troll is and I’ve done that a couple of years ago.

And it was hard, but I’m actually glad because it showed that the justice system took trolling and online harassment seriously, so that is the last-ditch effort.

Yeah, I also think it’s really important to tell somebody who is in the social media space who uses social media regularly about you being trolled or that you’re starting a social media account, if you’re new, so tell them, and get them to monitor your account if needed.

If you have any questions, the time is up now, I don’t know what time it is but we’ve got time for questions and I’d love some.

My husband’s very happy I put this quote in there because he loves Star Wars, and he got a Star Wars tattoo on his leg, it’s very big and it is a Yoda.

– So we have a roving mic going around.

It’s not a huge room but because we are recording, I’ll ask if we do use a question.

So just throw your hand up.

– G’day, Carly.

– Hi.

– Now, on the video that you showed, it looked like it was an American rally and one of the T-shirts of a person in a wheelchair had said, Piss On Pity.

– Yeah.

– Now, can I get your comments on that, please?

– Yeah, so disabled people don’t want pity.

Or many disabled people don’t want pity, I can’t speak for everyone and I can only speak for myself.

I know I don’t want pity.

People, when I go down the street, if I’m on the train, or just doing something that’s not very exciting, they assume that my life must be really hard.

They assume that disabled people’s lives are less than, we’re often used as inspiration porn.

Inspiration porn means the objectification of non-disabled people for the benefit of, no, sorry, the objectification of disabled people for the benefit of non-disabled people.

Stella Young, who was a comedian, a writer, and all-around great activist, coined that term in about 2012.

Her message was that she doesn’t want a non-disabled person to look at us and think, well, if they’re disabled and can do that, then what’s my excuse.

Or, she doesn’t want non-disabled people to think that our lives are so bad that we should be dead.

Often we receive pity and it’s well-meaning but it’s really hard, it’s really condescending.

I don’t agree with physically weeing in the street, but the Piss On Pity slogan is a very popular one in the disability rights movement.

And I know Jax Jacki Brown wears her T-shirt, Piss On Pity, quite a lot.

So you might see her around Melbourne.

Yeah, does that answer your question?

– Yep.

– Great.

Don’t pity us.

– Hi, I’m Simon, I’m from Deaf Victoria.

– Great, hi, Simon.

– I was just telling my daughter, my 11-year-old daughter, that I was coming here today for a social media workshop.

So my daughter went to me, “Why don’t you ask about TikTok?” And I was like, “What?” So I quickly Googled it and found out it was some social media thing.

But it’s an extension on more of a general question, which I’m wondering about, are young people more focused on different types of social media than older people.

For example, so, my oldest son, my second son says, “Facebook is for…

“For olds.” And I was, oh, okay, yep, that’s, so I’m just wondering if you have any thoughts or comments about how social media works with young people.

– Hm, well, I feel very old, thank you for that question.

I am 37, although I still look very young.

I don’t know about these young people’s platforms but I did somehow stumble across TikTok and someone at work who is 23 was telling me about TikTok the other day, still don’t really understand it.

I saw these really funny videos of people sticky-taping their feet to things.

So firstly, they started sticky-taping their feet to shoe boxes and walking, and then the thing that they would sticky-tape their feet to got bigger, and bigger, and bigger.

So they started off with shoe boxes and then they went to bricks, and chairs, and bottles, and then garbage bins, so they were walking like this, and then two cars, it was quite ridiculous.

That is my only knowledge of TikTok.

I think that people are really connected online and using social media platforms that we don’t, maybe, that people in this room don’t.

I don’t know how to stay on top of it.

Also, I think that it’s really, is it really important to look at what young people are consuming.

Instagram just took away their Like function, you know, their Like count function.

And so that removes the competition around other people, if another person’s likes is more than yours, people feel inferior.

And I think that that’s a good start for mental health.

I did hear that young people often send their photos around for vetting before they put them up to say, is this a good one.

And if they don’t get many likes in an hour, they’ll take them down, that’s quite ridiculous.

And also that the impact of influencers on young people and older people.

I’m in a group, does anyone know the Shameless podcast.

So, I really like the podcast and I’m in a group and it’s full of young people, and they’re so focused on influencers, I have no idea who they are.

I think it’s really important for people to follow influencers who are doing great work and who are doing social media for the right reasons.

I’ve just become an influencer.

I promote tea, which is really sensible.

I’d just become a T2 brand ambassador, which is funny.

But it fits with my lifestyle, ’cause I drink it.

But I wouldn’t do, say, like Botox injections, for example.

I did go to an event recently, it was a book launch, and the person that launched their book was an influencer and their door prize was a bunch of cosmetic enhancers and creams, so they had two door prizes.

And I won one door prize and I couldn’t use any of it so I just canceled all the stuff that I won, gave it to other people because I didn’t want to have to talk about it at the event.

Anyway, I don’t know if that answers your question.

I know very little about TikTok but everyone should do their homework today and find out what it is and sticky-tape chairs to their feet.

Anyone else?

– Great, thank you.

– Thank you.


– Thank you, I’m Deb from VCOSS.

Carly, I was just interested, you were talking about getting out of your bubble and you were kind of talking about it in the context of awareness, or in terms of being aware of other voices and that helping you understand environmental context for your advocacy.

I’m just wondering if you have any thoughts on how much effort you actually make in trying to persuade people outside your bubble as well, and kind of the emotional labor that kind of goes into that, whether you’ve got any thoughts on that.

– That’s a good question.

Sometimes if people are super rude or just can’t see it my way, I never say that we’ll have to agree to disagree ’cause I think that’s silly.

‘Cause often you’re agreeing or disagreeing on a really fundamental human right.

I think you can just give them a lot of information and they can read up on it if they choose.

I had an instance where a comedian I really admired used ableist language on his podcast, and it was quite constant.

And I was a fan of his for 20 years and I said, “Hey, this is really upsetting for me “and this is what it means,” and I provided him with really great information, not just from my perspective but people who had written on these, the impacts of comedians using these words.

And he blocked me, and I as pretty upset on that, but so many people who saw my tweet said, “I’ve never thought of it this way.” Lots of comedians had a say on it and thanked me.

It was really, I think, I was sad that that comedian who I’d followed for so long had blocked me, but I was pleased that so many other people spoke up and said thank you, or “I’ve never thought of it this way.” As a result of that, I, I guess, became online friends with Wil Anderson and then he invited me on his podcast after I pitched to him which has been really great, and now I’ve got to talk to more comedians about their use of that language, and now Wil has adjusted his language to use bananas instead of other words, which is great.

So I think even if you don’t have that immediate impact on the person that you’re trying to persuade, so many other people can benefit from what you’re saying, yeah.

– Thanks, Carly–

– Thank you.

– I’ve really enjoyed your presentation.

– Thank you.

– I’m just wondering, you talked about strategy earlier, and so do you have in mind when you’re setting up your strategy how you might measure your success and impact?

– Yeah, yeah, the platforms have insights on all of, I think Instagram might not if you’re just a, like it’s a personal account.

But if you have a public Facebook page, or a business Instagram account– Look at all the people you’ve reached, I used to do that, now– So you can look at all the people you’ve reached, I used to do that.

Now my measure is either people leaving a comment to say, “I read your book, “I really got something out of it,” or if I get work booked from it, or if I get asked to write for the media from a tweet.

So that’s a measure for me.

I think for all of us that work in a public space, it can be really easy to remember the negative stuff that’s said, but it’s important to focus on the good stuff that’s said.

So I have heaps of screenshots of people saying that my work’s helped them, and I can look at that when I get trolled to remind me of the stuff that I’m doing.

I think it could be good to put it in a, to copy and paste it in a spreadsheet for my work at Melbourne Fringe because it’s funded by philanthropists.

What I do for the evaluation is every time someone shares my work about Melbourne Fringe on their Facebook page, or through in the media, or someone tweets about it, I will log that on a spreadsheet so we’ve got the anecdotal evidence there.

Yeah, there’s definitely evaluation measurements within but it’s important to have that anecdotal stuff as well.

So keep screenshotting, keep measuring, and I guess as a writer, people ask me how I measure that success, or how they measure their success.

And I said, if you’ve made a difference to one person, then you’ve done a great job and if you’ve made a difference to yourself, then that counts as well.

If you use social media and changed the way you think about something, then that’s a great outcome.

– Hi, my name’s Heather, I’m from Association for Children with Disability.

I just want to ask what your thoughts on closed Facebook groups and are there any things to be mindful of.

‘Cause we’re just thinking about whether to go down that route or not, but we’re a little wary.

– Yeah, great question.

Closed Facebook groups are amazing for community.

I belong to heaps of them, especially around writing, and freelance work, and disability.

I run a few as well, so I think that people who run closed Facebook groups, or organizations that run them, and also Facebook pages or Twitter accounts, can be liable for what’s said.

So start setting up some guidelines around being kind and courteous and not saying defamatory things.

One thing that I see a lot of in closed Facebook groups, particularly around parents’ support of disability and ichthyosis is oversharing and I write a lot about this.

I write about how children should be afforded the autonomy to share their story on their own terms.

And so many times, a desperate parent, and I understand this, they’re desperate for advice, they’re desperate for a solution for their child’s pain, will overshare.

So they will write something about their child’s skin or their mental illness, or what a burden their child is, or worse, post photos of their child in a very vulnerable state.

And I think it’s really important to advise your Facebook community against this.

I often say, would you want this information being shared about you online in this way.

Would you like your photo taken of your genitals or of your sore skin, and being post in public forum.

And they probably wouldn’t.

I’m not very popular for saying this online but it’s so important that children have the right to their privacy and that parents respect that and adults respect that.

I had to do a thing yesterday with my mom and I said that, I said I’m really glad that social media wasn’t present when I was young.

I don’t think that they would have overshared but today’s children do not get the chance to say no to being placed on the internet.

So by all means, share things about children on the internet but think about how you’re sharing them.

So set up some guidelines.

I have guidelines in the Facebook groups that I run, kind of like no medical advice, or know that if you are reading about medical advice in the group to seek permission, or confirmation from your doctor that that’s okay.

No sharing outside the group and go back to my Clueless meme about making sure that things you say on Facebook remain private but know that these spaces aren’t private either.

They can be screenshot, they can be shared anywhere.

No defamatory stuff shared in there, also, it can be hard when things are argumentative.

I don’t know if anyone of you are in the NDIS Grassroots Discussion Facebook page, well, that’s something else.

And I think it can be really hard, you probably need more than one moderator for the group.

And make it a really positive space.

You have to share stuff, you can create content like you would on a public Facebook page, you can create content in there.

But remind people that a Facebook group isn’t a closed space ’cause everything can be public online.

Does that help a bit?

– Yeah.

– Great, thanks.

But they are excellent for community building.

I really like the Facebook groups that I’m in, most of them.

– Hi, Carly.

– Hi.

– My name’s Olivia from Sacred Heart Mission.

– Hi.

– So we work with people experiencing homelessness and we undertake a lot of sort of public activity as an organization but also internal activities.

Staff events, client events, that kind of thing, and we post about it on social media.

But we often receive really inappropriate comments about our community.

So people experiencing homelessness primarily but often also people with disabilities, people who are from LGBTI, who identify as LGBTI, Aboriginal, Torres Strait Islanders and so on.

So there’s a I guess a very big intersectionality there of different oppressions that are happening through our community.

So I guess what I’m trying to ask is when we post about ourselves in our organization and what we do, and we get those sorts of really negative, really negative comments, and a lot of them from even donors and that kinda thing, how do you suggest we handle that kind of stuff, making sure that that doesn’t mean we then stop doing them or stop posting about them for fear of that negative feedback?

– Yeah, that’s a great question.

So you could have some Facebook house rules on your Facebook page, a lot of companies have them.

I know, I used to work for the Australian Charities and Not For Profits Commission and run their Facebook page and I would work with my colleagues’ managers to say we do not tolerate racism, homophobia, sexism, ableism, transphobia, et cetera.

I would also say that your comments will be deleted.

You need to keep the people that you post about safe or they might not continue to engage with your organization, engage with the services that you need.

So you have a duty of care, I think, to them to make sure that they are represented in a safe way online.

You can also, on Facebook, I don’t know about Twitter, I think you can just mute those terms, but on Facebook you can stop certain words being said.

So if you go to your Settings tab on your Facebook public page, you can enter keywords.

So I’ve entered all the ableist slurs on mine so I get none said to me, or about anybody.

You can also, you definitely have to probably ask people’s permission.

I don’t know whether you give them release forms, media release forms when they take part in photos or videos, but let them know that.

Maybe you need to do a video and say we wanna be making a safe community for everybody and when we share people that we work with on our social media, we receive these comments, this isn’t on.

Maybe you also have to call out your donors.

I mean, are they the people that you want donating to your organization if they are gonna be making derogatory comments about the people they support.

I think yes, it’s definitely really important to keep people safe and when I used to write a lot for the media, I don’t write so much for the media now, I was horrified at the way they wouldn’t keep me safe as a writer.

And I see more writers, other writers, particularly in the feminist space, receiving such hate on news outlets’ pages that I really wondered what they were doing to stop that, because in fact, these places are my workplace.

I had a woman, I wrote about child growth attenuation which means that people, parents of children who are disabled, opt to get their child sterilized, or have their breast buds removed, or give them medication to stop them growing, and it was terrible.

And there was a story on SBS about that a few years ago and I wrote about it.

And I had a woman who, I think that was the first time she encountered my work, and she made a complaint to SBS about how awful I am for writing about this topic, and from then on, she continued to make complaints about my work to every organization I worked for.

So she would write to the editors to tell them off about my work, which was for disability rights.

She would leave bad reviews for companies that I spoke at where she wasn’t even attending.

And in the end, I had had enough and I told my editors, they would send me the complaints and I told that this person is very difficult, and her Twitter said where she worked.

And I was discussing it with someone, and I said, “Should I call her employer?” And I did, and I said, “I’ve actually had enough of this.” And a few months later, she wrote back to respond to apologize and she said it was her mental health issues that did that, and that’s no excuse.

But it was so bizarre, when I got my job at Melbourne Fringe, she made some awful comments.

It was really hard, and those places are our workplaces and I think if you are asking people to engage on your social media by making them content, then you need to protect them in that way, yeah.

Sorry, that was a really roundabout way, but I hope that helps.

– Hi, Carly.

– Hi.

– Thank you for sharing your perspective, it’s been really useful–

– Thank you.

– And helpful, thank you.

So I guess, I hope this is not an ignorant question.

But if a nervous novice to social media, which platform would be one to start?

– Oh, gosh, I think Instagram has been the friendliest community for me.

It takes a bit of work because it’s about photography.

It’s about maybe putting your face on there or putting people’s faces on there and it’s about lots of image descriptions.

I find that is, it’s a really nice friendly community.

I rarely get trolled on Instagram, surprising ’cause it’s a visual medium.

I think Twitter is amazing in following the news and current affair but it can also be quite, people have described it as a bin fire because you get people from all walks of life just coming into your conversations, and then you see lots of things that aren’t necessarily nice.

I think Facebook, apparently it’s the place for the old people, I still like it.

I really like Facebook groups.

I think that generally they’re quite safe spaces, or the ones I’m in.

I think all of them are great.

Facebook might be the best place to start, I think, if you’re a novice.

A Facebook page is useful and it’s got so many ways you can engage with your audience.

Twitter is hard because you’ve only got 240 characters now, not 140, maybe 210, I can’t remember, it’s a longer amount of characters than it used to be.

But Facebook, you can say lots of long passages.

But also remember that none of these profiles, none of these platforms, rather, allow you fully own your work.

So if you’re a writer, you don’t just want to make Facebook posts because at any time, that could fold.

Facebook could collapse and all your content’s on there.

So you might wanna set up a specific place for a blog for you to share your thoughts, and then you can link to your social media platforms from there.

Thank you.

– We might have time for one more if anyone wants to get the last question.

– These are great questions.

– Wait till you hear the next one, Carly.

– What, next question–

– Try to get them down here, yeah, yeah, yeah.

– Or next presentation.

Your presentation’s next.

– Oh, yeah.

– Next question, come on.

– Um–

– Oh, there’s another one, you can have two.

– Yeah.

– Yeah.

– Okay, I was interested in, are you aware of any sort of good exemplar models for people with intellectual disability?

– Yeah, yeah!

– That we could have a look at or–

– Yup!

– That could refer to?

– Yeah, so New South Wales CID do some really great work on Twitter, New South Wales Council for Intellectual Disability.

Lee Crayson, he was on You Can’t Ask That: Down Syndrome.

He’s great, he writes a lot about, he lives in Newcastle, and he writes a lot about his cooking and he often goes skydiving.

It’s really fun to see his posts.

I don’t know whether he’s got a public Facebook page but I’m friends with him on his private Facebook.

There’s some really great arts organizations.

Crossroads Arts in Mackay are running a amazing exhibition this week.

Actually, it got vandalized which is terrible but they had really amazing support from the community and they post a lot about disability arts.

VALID, which is a organization in Melbourne, do really great things.

Youth Disability Advocacy Council, YDAS, Services, rather, YDAS in Melbourne and Victoria, also…

I can’t remember how to say her name but her name is spelled A-I-N-E and Healy, or Hillbilly on Twitter, Aine Healy, she, yesterday, and I shared it as well, shared a bunch of great intellectually-disabled people on Twitter and organizations.

Also, the Disability Advocacy Resource Unit have a lot of things that they share, Women with Disabilities Victoria share a lot, Scope, who else.

Digby Webster, he was also on the down syndrome episode of You Can’t Ask That, and he’s an artist in Sydney.

Bust Up Films make great, it’s not disability lead, but it’s an inclusive practice.

They make really good films specifically around intellectual disability.

Dylan Alcott just launched a great employment campaign and there’s a lot of people who he features in those.

I don’t know whether he’s named them, named all the people but if you go into Dylan’s Dylan Alcott Foundation website, you’ll see.

So there’s lots of people and I think often, intellectually-disabled people are forgotten in the disability discussion.

That’s so important to amplify their voices and include their voices, so really great question.

Oh, Jane Rosengrave is another person.

Jane is an Aboriginal woman and she’s done some really great work on ABC with Ginger Gorman, who is a writer.

Ginger’s not disabled, but Ginger’s written and produced TV work around intellectual disability and Jane is an amazing advocate.

Great, thank you.