Host- Jane Scott I’m a wheelchair user with cerebral palsy. I’m an activist and I write a blog at Rolling Through where I’m working for a world where disabled people are expected to show up.
Dr Olivia Evans moonlights as a writer and performer. She has a PhD in horror film, and during the day does the much more frightening job of teaching in a high school. She is also a neurodiversity advocate, having experienced mental health issues from the age of eight which eventually developed into obsessive compulsive personality disorder.
Amy Claire Mills is a Marrickville based artist and Instagrammer extraordinaire with cystic fibrosis and diabetes. She’s also had a liver transplant and is neurodivergent, so Amy’s got quite a package there. Amy’s dismantling ableism with some of what you can see on the wall over there that beautiful pink quilt. I think that’s my favourite of the messages of hers that I’ve seen, ‘Do I need to manage your grief?”. Personally I find it really annoying when people stop me in the street to tell me that they feel sorry for me. I’m not actually looking to be felt sorry for, when I’m just out with my friends to see a movie. Thanks for that one, in particular, Amy. She’s also got other messages on quilts and T shirts and pins that say things like, “What’s wrong with you?” “Have you tried?” “It’s all in your head” and all those other things we sometimes hear from the non disabled community.
Bronek Lemow, is bilingual. He’s the secretary of Deaf Rainbow New South Wales He also likes to write short stories and novellas.
Welcome Bronek and thanks for stepping in at short notice.
And finally we have Monica Nguyen. Monica is a disability advocate and Tiktok content creator with tourettes, ADHD, OCD and Anxiety.
She has almost 30,000 followers and almost 400,000 likes on Tiktok.
She contacted us and Hannah fell in love with her channel. She tells me that she’s a bit nervous today because although she has lots of followers on Tiktok she is not usually talking to them face to face.
For those who can’t see it, Amy is wearing a pink jumpsuit. It’s very bright. Everyone else is dressed in black and white. Monica will tell us about her cultural background herself and everyone else is white. (If I’ve got that wrong please accept my apologies and let us know.)
The first question for our panellists:
“Why did you choose to be part of a disability pride fest?” This one goes to everybody.
Olivia -I am a queer person and and I’m also someone with a disability I was told to hide my disability by pretending that I was going to orthodontist appointments after school rather than the psychologist and I think that it’s really sad that I had to hide that. I juxtapose that with my queer identity – so, I can be out and proud as a queer person and that’s no problem but every time you talk about mental health or my personality disorder everybody gets very sort of awkward and fidgety and looks at the ground and doesn’t really know what to say. I would like to live in a world where people with disability are celebrated for who they are just as much as queer people.
Amy – Hey everyone! Hannah asked me to be part of the festival. I said “yes’ because there aren’t really many spaces where disabled people can live proudly. I’m not a big fan of the word “proudly” but where we can basically be ourselves, recognise that places need to do better in terms of our access needs and the trauma that disability can cause, but also the beautiful lovely moments of disability experience and … when you think about it one in five people in Australia experience disability so it should be louder. We are a really big minority group so why isn’t this bigger? It’s not for us, it’s for the non-disabled people out there.
Bronek – (Bronek used Auslan, which was translated). I was asked to join at the last minute but I think it’s really important that I’m involved because … we don’t want to feel ashamed of ourselves at all. Growing up, I felt like I had to pass as a hearing person in the community because I was supposed to speak rather than sign. You know, I used my voice more, but I feel, why should I be ashamed and do that? I use Auslan with my friends and my colleagues. I use cochlear and hearing aids. I’m comfortable with myself and I think we need accessibility wherever we go. It’s really important.
Monica Hi, I’m Monica. I’m 20 years old and I have tourettes. I have both physical and verbal tics. I also have cocholelia which is the swearing tic which 10% of people with tourettes have. I chose to attend here as I love what a disability pride fest represents. … I wanted to be here today to be with like minded people and to be among people growing disability pride.
Jane Those of us who organised this event spent a lot of our meeting time, apart from, “where are we gonna put this” and “who are we going to find”…. ( By the way Bronek wasn’t asked to come at the last minute because we don’t like Bronek but because we had lots of rearrangement of who was able to come so it’s really hugely appreciated that he was able to step in and lovely to have you)….
We’ve shared lots and lots of stories together about being pushed aside by our community, being ignored, having people look down when you start to talk about your disability, when you start to talk about how that works for you, when you start to say “well, actually I need to start work a bit later because it takes me two or three times as long as it takes you to get out of bed, take a shower and get dressed in the morning”. So I’d like to ask this question particularly to Amy and to Monica.
Do you sometimes feel cast aside by society and what do you think society loses when that happens?
Amy Yes. I feel cast aside. We have had to live through a pandemic where we are the last priority of this government. I have the kind of disability that’s invisible so when people meet me they don’t really see that I’m disabled, but I am. I take 4 hours to do my treatments every day and I have two medical devices attached to me at anytime… I spend all my money on medications, treatments, doctors. I can only ever work part time. We don’t have marriage equality or partner equality, so I live with my partner and I lost my disability support pension.
That aside, … the last two years have shown how ableist our society is and how little we are regarded. … if you just wear a mask it doesn’t take that much and it helps so many people. I was trapped in my house for two years. I’m on heavy immunosuppressive medication and I didn’t feel I had one single person who cared about me. I mean, you think about that as a society that’s really sad. I didn’t feel like I had anyone in my community or the government that had my back. I felt like I was ostracised. I think there’s a lot we need to do for disability justice in Australia, and I mean, I just named a few things. I definitely feel like more visibility would help. That’s why I like to wear “disabled bitch”. It’s so funny when I wear these badges or I have it on T shirts. People hate it, They look at me and they’re like, “oh, god” and I’m like, “which word do you have a problem with? Is it disabled or is it bitch because I think it might be disabled that you have a problem with”.
Monica: So on the topic of the task I’d just like to say that I definitely feel that I am (pushed aside) because my tics are very obvious. I find that people who don’t understand tend to stare and see me as weird and needing help or even possessed. When I go overseas to my home country, there’s less disability awareness and I have a lot of trouble because people say, “take her to the temple” or “give her a ritual cure”. That’s the issues and attitudes that are prevalent. ..; definitely affect society clearly as a whole because society loses its ability to offer understanding and accept differences when these attitudes are persistent However there are some people who get it and it definitely gives me hope for society as a whole that we can educate people and pass that on to the next generation.
Jane Monica, can you just let people know what your cultural background is?
Monica Yep, I’m Vietnamese.
Jane Thanks and thanks for those powerful answers.
I want to direct the next question to a couple of our queer panelists because interestingly, maybe it’s a Sydney thing and the time of year, but some people when you start talking about Disability Pride, they say, “oh you mean LGBTIQA+ people who are disabled ? “ and we went, “well yes, but not only those people – ALL disabled people get to have pride regardless of our gender identity”.
Particularly to Olivia and to Bronek, How do you think the two movements overlap and how do you think we can learn from each other to grow disability Pride as a movement – Maybe one day it could be kind of the size of Mardi Gras.
Olivia: I think one of the things for me I wasn’t born with a disability and I didn’t realise I was queer until I was old enough …along with most people, I think, and that I think is somewhat unique to our community….Other minorities if you are a person of colour or you have a religious background you have your family and you always have your family and they face the same issues as you whereas when we come out some of us are disowned by our families and the same thing with disability, right? Sometimes our family doesn’t want to know. My family don’t like it when I talk about my mental health and my personality disorder. I think it’s partly because I have OCPD I think my father has it in spades and he doesn’t want people to know that ..;But also ”we don’t want to be associated with that part of you”. So there’s something of a sense of chosen family, which is why events like this are really important.
Obviously also the idea of taking pride in something that has routinely been regarded as something you should be ashamed of, something that’s almost unequivocally bad. You know, we see a lot of stuff now around the selective abortion of people with disability and things like that. There’s this idea of, “how can we deal with this problem that people have and make them normal?” I think we’re seeing that now.
But on a positive note, I hope that the way that the community can have the Mardi Gras – a big celebration and they can be out and proud and nobody really cares that much more particularly around Newtown I would hope the same thing’s going to happen in years to come in Disability Pride
Bronek So when I was first asked to come here I thought this was a queer and disability Pride thing as well because I knew another panelist was queer So I thought that was the case but …Everyone has multiple identities relating to culture, sexuality, a religious affiliation
I think it’s normal for minority groups to have multiple overlaps with society as a whole. I think it’s really important to acknowledge overlaps and also the differences. Being queer there have been lots of different barriers to what barriers are there to me with my disability …; We need to be comfortable with both communities. And I feel like people are more accepting of the queer community. I’m trans and I’ve only just been out as trans the last year and a half. I grew up suppressing my trans identity. I thought there was shame in that and I focused on my Deaf identity and I started to sign and got really involved in the Deaf community and feel proud about that. But I hadn’t really accepted my trans identity and felt comfortable and proud of it – but they’re the one thing and so now I’m involved in both.
Jane Thank you. I apologise that I don’t know how to sign “thank you”. I’ll have to learn that for next year.
Jane When people start to talk about Disability Pride different things leap to mind. Dylan Alcott recently became Australian of the Year and one of the things he said was “I love my disability” And some people probably went “yeah, me too” and other people went “yeah Not really not quite going there with you”. I want to ask Monica and Amy, “Do you think it’s possible to have disability pride and still acknowledge the things about disability that are hard?”
As a woman with Tourette’s I continually advocate for Disability Pride Disabilities are what they are. So I wouldn’t be who I am without my Tourettes. You can still hold Disability Pride as well as acknowledging the challenges that disability brings .l discuss the positives as well as the negatives.
I stand for Disability Pride and acceptance, however, having Tourette’s brings me such as being in pain having anxiety attacks for doing basic ordinary things such as catching the bus Or just attending a job interview So I believe in order to have authentic disability Pride We must also showcase the everyday difficult experiences BBB
I’m going to talk a little bit about the Quilt – In response to please answer, so it says, “Do I need to manage your grief?”So when I tell people that I have Cystic Fibrosis the first thing that they usually Is tell me That they’ve known who has died from cystic fibrosisAnd then I have to sit thereWith strangerand hold them While they cry through their grief And take on their grief and Also.,. as Jane said, People who try to cure you or fix you or Save you are wrongAnd so disability Pride to me is standing up to that ableismAnd saying no there’s nothing wrong with me I’m perfectIt’s you and society that is not accepting you’re notYou’re not able to put in structures to support meSo I follow the social model of disability obviously we all do yay It’s about the Barriers. Our access needs Aren’t met.I don’t have grief about my life my life is my life It has struggles I was born with disability I will die with disability I have struggles but it doesn’t mean that I’m sad because of it And I really hate when Society constantly tells us that It’s negative to be disabled And while we all expect it is extremely difficult To live in an ableist Society We aren’t the problem. we’re not the problemStop trying to fix us stop Offering unsolicited advice When you meet us on the street and stop Telling me about your dead friends because I That’s your grief and I no longer taking that on I’m here proud…
Jane: It’s time for our mystery object so Hannah’s got some mystery objectsSo what we’re going to do is we’re going to get each of our panelists To choose a mystery object And tell us how it relates to disability Pride for them
So first off we have a pink hula hoop
Pink hula hoop
Because I’m really into hula hooping So pink hula hoop because because it’s cool (Hannes swings the hula hoop around her arm as she speaksThis is fake fruit)I think they’re mangoes on the vine They were cheap and strange
This is a long legged dinosaur I think this dinosaur has some kind of bodily difference how to holds up plush toy dinosaur with very long legs
Because dinosaurs Rock We seem to have a bubble sword Hannah demonstrates making bubbles with the bubble sword
Hannah Dons a long bright blue Hoodedcloak
I picked this because one my special interest is science fiction and Star Wars I’ve invented a whole country in my head Weather Star Wars theme Which I don’t think is it all strange Some people do Is cool I thought it would be cool to wear it iOut but I think neurotypical people would…
How are you should come to a Folk Festival You can wear your cloak and you’ll be amongst fellow strange people I know this because folk festivals are where I hang out when I’m not at disability Pride festival Ok so each person gets to choose their mystery object and tell us how it relates toDisability Pride for them
Who wants to go first?
I please select the dinosaur Hannah?
We have a green dinosaur with incredibly long legs
(Monica takes the bubble sword. Bronek takes the plastic fruit)
Olivia – I’ll have the hula hoop oh it’s moist it’s soggy. Hannah tries to offer her the cloak but she says no
Jane: Hannah, you are going to be the princess from Star Wars in your cloak Ok who wants to tell us first about why they chose their object?
(Amy raises her hand.)
Amy: The green dinosaur is a beautiful tactile object that crunches and is soft. So why i do quilts and cushions and all beautiful soft things is that my stim is to touch tactile thingsAnd squeeze them and it soothes me. So this is like… mmm. I just want to cuddle this. And I’m feeling happy in my space and I feel accepted in this beautiful room filled with awesome people And I just want to stim.
Bronek:Why I chose these fruits and how it relates to my identity These fruits are very ripe As you can see and very freshAm I represent growth And out pride is a source of comfort …And excitement and energy for our community and we’ like to grow it in the same way that these fruits are growing
Monica: Hey guys so I chose this bubble sword becauseI think it’s a really good metaphor for How ticks popcos they’re regular they’re vibrant they’re out there I feel like the one how you wave it really represents how everyday in life when I go outside and face some sort of discrimination It kind of symbolises for me like, wave them away, like ‘“Get away”.That’s why I chose it.
Olivia; It’s bright and colourful like us But also takes up a lot of space and in some ways, I think that’s what pride is about right? It’s about unapologetically taking up a fair bit of space.It also represents a form of exercise that I would do perhaps for funRather than because somebody tells us, “ have you tried exercise?” becauseThe next person who tells meI need to try yoga for My OCDP, I will personally hurl them into the sun.I do like yoga but I don’t want to see it necessarily as a cure-all.So ID rather do exercise for fun and take up space rather than to sit in a corner quietly deciding not to speak
Jane;We’ve had a bit of input so far on how covid has had an import on our community but I want to take that a little bit further. We’ve got about 10 minutes….COVID has been a terrible experience for the disabled community in so many ways How do you think building disability Pride can help to change that?
I’ll direct this first to Bronek and then to Amy
Ok I think the biggest thing with the impact of covid has been About information and misinformation. There are so many barriers for the Deaf community.Getting information in an accessible way Announcements changes in the laws,Exclusions what you can and you can’t do. it’s been incredibly confusing for the deaf community Not knowing what you could do or not because of not having access to everything in Auslan.Some things are provided in Auslan, but not everything and a lot of Deaf people don’t have the access to English.A lot of people are missing out on information.Recently, we’ve seen Auslan interpreters for press conferences On television. that’s made a big impact On actually getting the word out there Because whoever does have it can get the information and pass it on to other people in the deaf community. More and more people in the wider community are also seeing Auslan and becoming aware of the need For it so that’s made a differenceAnd that awareness of how important information is.
Amy: I would say the Biggest – I mean, it’s been 2 years of hardship 2020 We didn’t know what the pandemic was two now when we’re having spikes …and deaths are happening but they’re not being reported in the newsWhich is just devastating But in terms of what I’ve learnt from the covid journey is That I have to be loud I have To be angry I have to put my voice out there I have to advocate for myself In a way that I have never had to before Which is scary you know to have people say online things like “The strong Will Survive the weak will die” and “ these deaths were always going to happen”. No! That’s not how it is. And when people just say to me oh you know “This is like the common cold” I’m like, “Sweetie, the common coldIs different for us ok?” “It’s a very different experience for me than you”. So I would say that the solidarity I found In the disabled and chronically ill community with amazing. I’ve met so many advocates and activists out there who are online speaking truth to power. And so, I would say like go on find your community online.
It’s sad that we have to be online and things like this can’t be bigger because of covid safety we really need to protect ourselves but yeah find those activists be loud find your voice yell at people be angry we have a right to be angry about this situation.
Jane: I want to introduce Fiona to you now she’s been downstairs collecting peoples input to the Royal Commission. That’s an incredibly important job. Thank you Fiona. Fiona’s done all kinds of things she’s worked in Afghanistan she’s worked oh everywhere and I’d like to invite you to share about why you wanted to be involved in the disability pridefest and how do you think the royal Commission might make a difference for our community?
Fiona; thank you so much lovely to meet you and apologies for coming in late. Am I loud enough? I actually have a hearing impairment myself so if anyone should be aware of sound great also slow it down ’cause I’m a bit nervous so I work for an organisation called Your Story and basically why I’m here today is I’m very passionate about. Wanting to raise awareness about the disability royal Commission before it finishes at the end of the year. it is a royal Commission that was fought for a long time, many, many advocates involved. There isn’t a lot of awareness about it and one of the things that is missing and Hannah talked about this before is contributions, input from people with disabilities so there’s input from the experts, so-called experts, the government, academics all that and that’s great and I’m not critical of that input that’s really important to and it documents some of the systemic point of view but I think it’s even more important that people who have actual disabilities in terms of mistreatment I mean the royal Commission is full time and you don’t have to prove your disability or meet criteria that kind of thing you don’t have to do that. Our organisation can provide anyone here today with support in sharing their own views for change an improvements to make life safer for people with disability and you’re able to do it here today or we can give you something to take away and you can come back to us another day and it does end at the end of this year. And I think that kind of goes to your question though I might have got a bit off track. someone came to our stole and asked what do royal commissions do? Will it make any difference? And the truth is they just come up with recommendations they don’t force government to do anything. Sometimes governments say “Oh well we don’t have the funding for it” or whatever it is but those recommendations still send a very very loud and clear message about what we as a society I think should be the minimum standards. They are often referred to so I just think they have that potential. I also think sometimes sharing an experience or an idea for change is very empowering for people, particularly the disability community when we’re often the voices forgotten. I would hate someone to find out at the end of the royal Commission when it’s too late. ‘I didn’t know”.” I have a great idea I have a story I want to share”. That’s why I’m here. will the royal Commission lead to change it’s not going to deal with court cases it will send a loud message to society and that’s part of what this event is about to being part of the community Being collective being a unified voice on certain issues that’s great I love being an advocate I love.. Also contributing to the royal Commission might help you feel like you’re part of something that makes a difference… sorry if I took too long but…
Jane: As you can see, there’s a lot to be said about disability and disability pride. Thank you to all of our panellists… Anne thank you for coming along today. What’s happening next, Hannah?
Hannah: Ok. Thank you, panellists. Many of these people I’d only met on social media so they’re amazing. And my favourite amy quilt is the one that says, ‘Have you tried?” and I really think you should make one that says, ‘My cousin’s dog’s uncle’s best friend has the same disability you do”.
Amy: “and they tried yoga or they tried acupuncture or tried the fasting diet or going gluten free or paleo or anything like that and it cured them. You’re one cure away”
Olivia: … or there’s that thing where people do, “oh great my friend has that” “cool!”. Or even better, ‘My friend has that. Do you know them?” is it far apart of a secret underground network of people with disability or something.
Amy: OK, so, before when I said people will come up to me and share stories of their friends who died, they ask, “did you know this person?” and I’m “No!”.
Hannah: so thank you guys. I also think it’s amazing that we’re able to have two people who communicate in a non conformist way… big sign of applause for the Auslan community (everyone waves in Auslan applause). They helped us out at the last minute. one of them cancelled and I cast it back to someone else who passed it back to someone else and really came through for us. The deaf community are really pioneers of our movement. We owe so much to deaf culture and deaf pride so can we have a big (raises hands in Auslan applause). and what about Monica … tic well
So now we’ll have a 10 minute break, a chance to talk sign the memorial wall talked to the Royal Commission. There will be a chance for maybe the first two people to talk to me to have a moment at the open mic. After that we’ll have the art contest. So 10 minute break – not 20, not 100, but 10.