Interview – Ebony Wightman

My guest today is a designer, illustrator and artist. In her work, Ebony Wightman draws on a life's worth of health challenges and her own experiences as an autistic person, but that's just one aspect of her work.

As one of the founders of We Are Studios, an entirely disability-led art studio in Blacktown, I've seen Ebony's leadership for her community, for the intersectional rights and identities of autistic and neurodiverse communities and people with a disability at large, it's had a real impact across Sydney.

She's brought together programs and work at the Biennale of Sydney, galleries from Blacktown Arts to Hawkesbury to the Art Gallery of New South Wales, and along the way become a key advisor on disability and access to governments.

In short, she's doing the work of changing the city's cultural landscape.

So of course, I've always wanted to know more.

That's what this podcast is all about. Getting to know the people who make great things happen, who they are, how they got to be that person.

Matt: Ebony, thank you so much for being part of this and saying yes to doing this.

Ebony: Thank you very much. I sound really great. That intro was the best I've had.

Matt: Can I start this story way, way earlier? I want to understand how you got to be the person you are now and having the impact that you're having now. Can you talk about what you know of the lives of your parents, maybe your grandparents? Are there any clues to the kind of person that you are now?

Ebony: Yeah, so I'm actually a country girl. I grew up in regional New South Wales in Armidale, which is the highest city in Australia. And my parents, who actually just left this week because they came down to see me and my exhibition, my partner for the week, they were also born and raised in regional NSW, but a bit further out than me in a place called Narrabri, but also a very, very small town called Bellata, we're talking about 200, 300 people.

My dad's side of the family, my grandfather was a train driver and a steam train driver actually. He passed away when I was very, very small, about three months old. He's actually my namesake, my middle name is Ebony Thomasina. He's Thomas, and there's actually interesting stuff about that side of the family as well. But he was married to my nan who was a homemaker and raised a family.

Then on my mum's side of the family, I have my grandmother who's the only living grandparent of mine. She's still out in Bellata.

Matt: Where's Bellata?

Ebony: It's between Narrabri and Moree, if you're familiar, it's cotton country. And she was a bus driver for the school to get the kids to school in the small town, because obviously if you're living in a very small town, there's no high school, so traveling those kids out there. And then my other grandfather, he was also a drover. They grew up in quite humble beginnings.

Matt: We're here in Blacktown, growth centre of urban Sydney, very urban kind of environment. We're in an art gallery, in some ways couldn't feel further away from country, rural beginnings. But I love the idea that that sort of shapes, we're going to talk about the kind of community you've built here at We Are Studios and in some ways, there's a bit of a small town kind of feeling of community around this gallery. And I wonder if some of that stems from those early days. But I feel like you just dropped a little clue about your dad's side of the family, that there was a real story there. Is there something that I should prod a little bit further on that?

Ebony: With my dad's side of the family, see during covid, I was very, very ill for a long time. And my kind of autistic deep dive was ancestry. So I felt a bit like I was a detective doing all of my great grandparents and great great grandparents' ancestry. And I felt like I was playing Pokemon. I needed to get a photo of every single one of them. Got to catch them all. And through that, I found out that on my dad's side, there's a reason why I have quite curly hair, because my great grandparent was African American, and he migrated from Brooklyn, the son of released slaves from Louisiana, and migrated to Australia, and started a cordial factory in Walgett - I don't think cordial was really what was happening. I think there was some bootleg part of that.

Matt: Was that a big revelation in your family when you dug that up? Or something everyone basically knew?

Ebony: No, it wasn't something people knew. But like, it's quite bizarre looking at it retrospectively, because, you know, my dad, he looks mixed-raced. My grandfather, he looks mixed-race. And so we always kind of assumed that there was some kind of different ethnicity outside of Anglo-Saxon there. And I just don't think there was much talk about it, because funnily enough, I don't think it was necessarily like racism. It was actually just more that he was considered American. And it's quite bizarre, too, because if you look at newspapers from the time, there was a lot of write-ups, because they actually had a bit of drama. He got divorced quite late in life. So that was all over the newspaper. But yeah, they always referring to him as being American, rather than African American. And this was like prior to the White Australia policy as well.

Matt: Can you talk a little bit about what childhood was like, growing up back then, in this pretty rural situation?

Ebony: So my parents, my mum's a beauty therapist. She still works as a beauty therapist. And my dad was a golf professional. And I had like a pretty good childhood in the very beginning. And then some tougher stuff kind of happened in life, like it does to everybody. I grew up in quite low socio-economic circumstances. And life was a struggle for a lot of the time. But my parents, I couldn't ask for better people in the world to parent me for anything that they didn't have. They made up in spades with who they are and the values that they instilled in me.

One of the reasons I'm here today in the city is because regional NSW doesn't have a lot of health. Well, not actually health, but like service providers and the kind of support that you would need if you are someone dealing with chronic health conditions, be that mental health, physical health, chronic health, whatever it is, they're really at capacity servicing the people that live there. So a lot of things I experienced were kind of, I guess, medical negligence through circumstance and lack of capacity.

Matt: When did that first arise for you?

Ebony: I don't remember because I was born with a pneumothorax, which is a lung condition. I've had really severe asthma my entire life. And I always feel like when I tell people that I need to have an asterisk with it as well, because asthma is a spectrum disease where, you know, you can be treated with a couple of parts of the ventolin and have asthma, or you can be somebody who's hypoxic every day and has low oxygen levels that mean you're hospitalised or intubated. And I'm on the other end of that spectrum. So, yeah, from birth, I had a lot of physical chronic health issues with my lungs. And I guess my parents did the best they could at the time with the support that they were given, but a lot more could have been done from hospitals. And then kind of started the brain stuff where, yeah, my different ways of thinking, my neurodiversity, but also mental health stuff comes into play there as well.

Matt: Can I put that in a different way? When did you start to recognize that the experiences that you had, whether kind of physical health or some of those kind of different ways of thinking, when did you, do you remember that moment when you, you know, or the sort of time when you started to think, oh yeah, this is not the way that other people experience the world?

Ebony: It's funny, I don't think I've actually ever been asked that. So I'm trying to think of it retrospectively here. And I think I'm still coming to terms with that as well, because every day I kind of find out something new that wasn't normal. And I guess that's everybody when you're talking to people, you know, we all have our own lived experience of our lives and what we consider normal. But it's only when you start talking to others and getting a grasp on what everybody kind of experiences collectively that you get to see that there are these little hints towards what you're experiencing was out of the ordinary.

I'm gonna let you in on a secret here, you're very lucky because, or unlucky, I guess, is the case, maybe. I have selective mutism. So telling my story and my side of life has always been a struggle. My experience of disability is that I realised, I guess, from very, very young that people kind of don't like to hear about it. And maybe if they don't perhaps not like to hear about it, they can find it confronting, which means that oftentimes they will take a step back from you or not engage with those conversations, I guess. So you kind of learn to not talk about it, to talk about everything.

I was very, very good at asking a million and one questions of people so that I never actually had to kind of talk about myself.

Matt: I totally get that. I'm an interviewer.

Ebony: Yeah, me too, but not professionally.

Matt: When I was reading about your childhood, there was a really interesting piece you did for Sydney Children's Hospital recently, this idea of a radical care kit for kids who were in the hospital, and it was built around some of your own experiences. You talked about one Christmas when you were in the children's ward at McLean Hospital up on the Northern Rivers. Just you and a baby in the ward, and it was pretty lonely there. And it was Christmas, and you had a few sort of essentials in your bag, pyjamas, an expired passport that you'd taken from your brother. When we're all thinking back on our childhoods, we all have a different mix of experiences that colour us. And for you, that experience of being in hospital waiting rooms, in doctor's surgeries, it seems like it's something that is a really pivotal time for you that you kind of look back to. What was that like?

Ebony: It was, I guess, at the time, probably quite mundane. It was just something that was constantly part of my life, but also part of the life of my parents as well, because a lot of my stuff is hereditary. So my parents themselves were dealing with chronic health conditions at the same time. And so it was kind of like a running joke in our extended family. It's the Wightmans, who were the hypochondriacs, but definitely not hypercontriacs. They were all definitely real things happening. I didn't really think of it a lot at the time, other than being lonely, I guess. And I think that was something that kind of extended to my life at large, I guess too, so I didn't really necessarily credit that to being pulled out of school, to having to go to these things. But yeah, I spent a lot of my time surrounded by adults, yeah.

Matt: It's not just being stuck in that hospital room, but having this experience that is really different to other kids and not being able to talk to them. And even just being labeled as a hypochondriac, that's another way of kind of policing, you know, like don't talk about that. Don't tell us about the things that are wrong with you because, you know, you're kind of making it up on some level, right?

Ebony: Definitely. And I think a lot of people who have experienced chronic health conditions or disability at large will empathise with that, that for the one thing that you kind of share with people, there's 25 other things that you haven't up until that point. And so people can make assumptions, I guess, about you and your lifestyle. Like, I played a pretty happy kid. I still play a pretty happy adult. But that's not necessarily what's going on at the time. And I'm very good at playing a part as a lot of autistic people really are.

I have an exhibition happening right now at Blacktown Arts. It's all about being a spy. Because that's kind of how I felt for most of my life. Like, I was playing a part. I was in disguise or I was deciphering what was happening around me.

Matt: Looking for clues. Like, how should I behave in this particular situation?

Ebony: Exactly. I believe the words are people pleaser, but I definitely, if we're talking about it in a pathologised way, we have the trauma responses. Fight, flight, fawn, freeze, and there's another one, but I'm a fawner. I submit a lot.

Matt: You know, it's interesting when you look at all of your various works that I've seen anyway, there is this kind of funny tension between that playfulness and humour, but also like a sort of a deeper vulnerability as well. And that interplay between them, I think is one of the things that makes it really interesting. We're going to talk about that in a little while. Often when I talk to artists and people who are really creative in their work and in their passions, creative play was a big part of their childhoods. Was it for you? Were you making things? Were you painting or drawing or were you building things? Was that part of your childhood?

Ebony: Yes, it definitely was. And I think I can credit being a child of regional NSW to that one. I got to do my own thing by myself out in the backyard. My mum was heavily into Christmas decorations and decorated our house for Christmas every year. And they were all handmade. And my sister helped with that as well. And so I was constantly having... Creativity was part of my life, not necessarily in a traditional sense. But my parents are makers. I like to think of them like that. And I always say to them, if I'm doing an exhibition or I'm creating something, that I wish that they were here. Because if I could hire someone as my artist assistants, it would be those two. Except for they fight too much while they're doing it, but that's okay, so do I.

Matt: Brings a bit of drama, right?

Ebony: Yeah, exactly. We just play the theme song to ‘Love and Marriage’ while they're having a barny.

Matt: What was school like?

Ebony: School for me was difficult. Primary school was something that I enjoyed up until a certain point. I think my neurodiversity, and it wasn't necessarily called that at the time, was something that meant that working in traditional ways in the school system wasn't something that really worked for me. I tried my best to fit in. I had friends and things like that in primary school and in high school as well. But I never felt like I kind of belonged or that I was doing it right, if that makes sense.

A lot of autistic people have a similar experience of that in childhood. A lot of people assume that we're older than we are. They're like, oh, you're very mature. And then you get to a certain point and then you start regressing. And as an adult now, people tend to think I'm a lot younger. And I like to think that it's actually that I've been eight years old my whole life. But that eight year old looked a bit strange.

Matt: We're talking about the sort of late ‘90s into the early noughties. That's your period in school and then high school. It's funny that, you know, in some ways there has been such a radical shift in the last like five to 15 years, I guess, around neurodiversity with a sort of a much growing sort of appreciation and understanding of the prevalence of neurodiversity in society and the value of different kinds of ways of thinking and that they've been there as part of society for a very long time. Do you feel like as you were going through that period, you know, as a kid at primary school, but particularly at high school, that people just didn't understand, they weren't just there yet?

Ebony: Yeah. Well, I'm kind of an interesting case in so much as I was referred as about eight years old to a child psychologist because they were like, I wasn't meeting certain milestones and different indicators there that something just wasn't happening the way it necessarily should be. I went through a whole different bunch of assessment stuff and worked with her for a little while.

And a report came out of that at the end of it, saying a lot of different stuff, putting me like in the lowest two percentile of a lot of different communication skills and processing stuff and all of these different things. And from that nothing happened. It was this big report. And if I was a male, for example, I would have been given an autism diagnosis there and then, ADHD, there and then. But because I was a female, and because I could talk to people and empathise, not that, you know, males or other people can't do that, but I was presenting in a certain way, it was social engineering, I guess, as a way of survival, that I didn't get any support.

I was actually diagnosed with a disease, I guess, or a processing disorder called Irlen syndrome, which they've shown to now be fake. I'm not sure if you've ever seen people wearing coloured glasses to help them with reading. It was a big thing, I think, in the 90s, but now they've shown that it just comes under the umbrella of neurodiversity, so dyslexia, things like that.

They taught me to read. I couldn't read for a very long time, and then they were like, OK, done. She's good enough. Whereas I really needed some extra support, and yeah, it didn't happen. So I imagine, I hope that things are different, I guess, now.

I think that there's more understanding of what neurodiversity looks like on a larger spectrum, but I also think that understanding doesn't necessarily actually make people change their behaviours, because that's a longer term thing, and implementing those changes is something that really needs to happen before anything can actually change.

Matt: After all of this, you left school and you ultimately wound up at the Billy Blue Design School. Was that something that was like a really obvious next step for you from school to go to design school?

Ebony: I did really poorly in high school. Some of that was because of my different processing and different brain, but also chronic health stuff that wasn't kind of managed at the time, which meant that I had to take a little time off school. I was always kind of interested in art and design, and my sister worked at a design agency at the time. So for me, I guess it was a natural progression, because what do artists who want to make money do? They become graphic designers and then they realize you can't make money as a graphic designer as well. So that was kind of what I was doing in that. And they have a lower UAI or ATAR application, and it was portfolio based. And really, I just, I think I wanted out of Armidale as well. I wanted to go to the big city, and my brother lived here and I lived with him for some time. And also access to hospitals and things like that was also a draw card.

Matt: Bythe time you were studying design, technology and a whole bunch of things had changed the whole climate around design. We now have Canva and we now have, you know, like...

Ebony: Everyone's a designer.

Matt: Whereas like 30, 40 years ago, design was at the centre of the culture in a super interesting way. One of the things I found immediately striking about We Are Studios when I first came across it was the strong and distinctive design sensibility. Before I knew that you'd sort of come through this design background, I was really kind of intrigued by that. Because I know you talk about it in this quite dismissive way there, like it's the thing that artists do who can't get work as an artist or have a path to artistry. But design can be extraordinary. What did you love about it?

Ebony: I like being able to make things work. And I think, you know, what you've just said now is that you looked at We Are Studios and I guess there was some form of professionalism that kind of comes along with that. You see something and it looks the part. It sells a story, it makes it work. I think that's what good design does. Bad design does the exact opposite. But yeah, I've always been, I guess, a problem solver. And I'm grateful for the critical thinking skills that my learnings in that area have given me. That I look at things as systems, I guess. And like, I did design, yes, but the stuff that really excited me, I guess, in that was the larger communications part. So we're talking like marketing, brand language, user design, user experience as well. And so I feel like someone with disability, that's always at the front of my mind. And also like reading reports and the way I see problems at large as well. Like, you know, one of my favorite units at school, well, at university, sorry, was a social enterprise unit. And I guess all of the stuff that I kind of learnt in that was heading towards this, where I am now.

Matt: I listened to you talk about your eight year old getting marked down for communication skills. And I just was immediately thinking about the clarity of communications around We Are Studios. And what I've seen of your ability to communicate and advocate on behalf of your community. And clearly you are an excellent communicator, but also a really sophisticated one. So there was a deep mistake at that time, right? In terms of understanding or being able to evaluate the person that you were going to grow up to become. You did really well. You got the top achiever award, you know, effectively the equivalent of a university medal for sustained creative excellence when you were at Billy Blue. It must have felt like you had an entree to like a great career in design at that point. What did it feel like?

Ebony: It was again different experience for me, even tertiary education. It took me like eight years to finish. My twenties were again marked by prolonged periods of chronic illness, mental health stuff as well as physical disability too. And my experience of university was very different, I guess, to an average student. Because of that, I kind of didn't have that cohort, I guess, that, you know, you go through uni with those friendships that you make and that, I guess, networking that people have. I was kind of in for my units, and then I was out. And again, I didn't, I guess, have the support there that I needed in terms of disability inclusion. And I guess, that's also because I didn't necessarily understand my own needs at the time too, which is a common experience for everybody, but people with disability in particular.

So it was like a big achievement, I guess. But again, it was something that I never really talked about. You talk about me being a good communicator, and it's so funny that you say that, and people do say that to me often, is because I've spent so much of my life literally just withdrawing from communication full stop. And I think that's because I was uncomfortable in my success, but I was also uncomfortable in my, I guess, my miscomings or my bad experiences as well. I understand there's probably a much better word for that, but yeah, it was bizarre. And I didn't feel like it kind of happened at the time.

I did have a lot of opportunities that opened up to me too, but I was aware of my capacity limits at the time. And even though it would appear like I had these opportunities in front of me, especially at the time, most of those opportunities were for unpaid work. And most art designers, if they're going into the big design companies or advertising agencies have to do those internships, which themselves need a certain degree of privilege to be able to partake in.

Matt: I always think back to my time working in community radio and doing indie music magazines and that kind of thing. I did exactly the same thing, you know, like giving away my free time to do something great and doing it for free and not necessarily having money to do that, but just finding a way to make it happen. And it was driven by passion. But there's something different when it's a big place where there is a lot of turnover that you're making an active contribution to, right?

Ebony: Yeah, definitely. And I went into that. I went into a few of those spaces and there were places and spaces that wanted me, the places you would imagine. We had a portfolio night at the end of my degree where big advertising agencies and the big players came in and took their pick essentially. And I remember getting a lot of emails from people trying to follow up. And unfortunately, I think, or fortunately, I guess for me, depends how you look at it, the black and white thinking that comes with neurodiversity means that I wasn't able to make compromises then on ethics or morality. And a lot of those big players are often dealing with some less than, basically things that didn't actually align with my morals, yeah.

Matt: You know, at a certain level, you've got to make those decisions. And if you don't make them, you're making them in a different way, right?

Ebony: Exactly.

Matt: I've been searching for clues as to your path on the internet and in the record. And there are lots of little bread crumbs here and there, you know, a really deep Pinterest-backed catalogue of mood boards and these curvy mid-century-inspired illustrations that you've done as prints and commissions. Around, probably around a similar period, it sort of feels like you were trying to work out what is your place in a way. Would that be right to characterise it that way, just trying to find the right path, if it's not an agency design path?

Ebony: Yeah. So, it's so funny, it's really funny having had you have a look at, like, kind of to do your deep dive on me, because I don't have anything really up there. So, it would have been quite a difficult thing to do, I guess. And the things that you would have seen would have just been, like, throw away stuff here and there of things that I have done. Because if you look at my Instagram account or even my LinkedIn right now, I'm so bad at talking about myself or showing what I'm doing. Like, I keep putting it off and there's definitely something there. And I need to get better at it.

I'm very, very good at advocating for other people and kind of spruiking on their achievements and all of those different things. But for myself, I mean, even at this exhibition that I was talking about earlier, they wanted me to give my biography for the exhibition. I was like, can I just have a thing saying that I'm not giving it to you? Because I'm a spy, right? I'm an elusive, undercover creature. And whether that's some mental health stuff going on there, which I'm definitely sure it is, or whether it's kind of safekeeping for myself, I'm not quite sure, but yeah.

Matt: I see that play out with people who are in different parts of that neurodiversity space. Some people are just so happy to tell their own story, and other people are really reticent and really, I guess, aware of how it can sort of backfire on them, and that sort of feeling of being rejected or being not wanted, or not valued, or whatever, and that can play out so differently for different people. It feels very sort of unpredictable in a way.

Ebony: Yeah. I think it's perhaps the control aspect. I felt like out of control for a lot of my life, and that's something that I kind of have a small bit of control over. The funny thing, though, about like select mutism and things like that as well, is that the reason why I kind of became that way was because I was a very open person. I was super, I guess, naive might be the word. I shared everything with everyone because I have no filter, I still don't. And I guess to kind of stop people from kind of thinking, wow, that person is a bit strange. Maybe I'll just take a step back. That the only way I could kind of do that was by just not talking full stop because I couldn't put a filter on. I still can't if, you know, anyone tells me something.

Like even with the studio here, if there's a secret, I'm telling everybody. That's not true. If you tell me it's a secret, I'll know it's a secret, but you have to tell that to me explicitly. Otherwise, it's free game. And I'm a sharer, but not.

Matt: That makes so much sense. That early covid period, I guess, for all of us, for the entire society, the whole world, it was a kind of a crazy period. It was like a war period or something, you know, everything changed. Everyone was thrown out of their patterns, but I get the impression that for you, this was a particularly tough time, like a really dark time. And also, you know, like I was saying earlier, a hugely transitional time, which has really led to all the incredible things that you're doing right now. So I want to ask you, you know, it's probably really tough to talk about, but the work that you're doing now is so impactful. Can you talk about that period and how that played out for you?

Ebony: Yeah, so, it's funny when people talk to me about covid period. I like to tell people that I was self-isolating before it was cool, because prior to that was also the bushfires, if you can remember. And for somebody with respiratory problems, that meant that I was essentially at home. I didn't see anybody but my partner or my specialist for probably about three years. So, yeah, it was pretty isolating. I mean, I would have seen my family, I guess, at the time as well. And the odd outing here and there when I had the capacity to.

But yeah, I owe my life, I guess, to a bunch of doctors, specialists who kind of put some intervention there during covid. The respiratory clinic at RPA, which is where I was going at the time, was closed, which was hard, because you have people there with really chronic conditions like cystic fibrosis and things like that, unable to go and see their specialists. And that, you know, clinic mostly services people who are from low socioeconomic background. So it was really a pay to play time. And my partner, he thought I was going to die, which I probably would have if he didn't make the call. But he was really scared to take me to the hospitals at the time for obvious reasons, because yeah, just taking you into the lines then, I guess, then.

Matt: We all had so much fear, even just interacting with other people, let alone going to, I mean, my partner was working in a hospital at the time. And you know, like I was always nervous about that. But going in with breathing challenges at that time must have felt, yeah, must have felt terrifying, yeah, for you and your partner.

Ebony: I think I was, I was just desperate. So I had resigned myself, I guess, to a fate. It was more him that was hanging on, I guess, in that circumstance. But yeah, if a general cold and flu can take you out, covid was a very scary thing. And I say was, still is. You know, people who are immunocompromised die daily from common colds, flus and covid still.

It was quite scary, but I was really lucky that a specialist who I had seen at the clinic decided to see me in his private rooms in the city. Dr Kwok Yan, he's the man. And he's been treating me since. But also like the mental health aspect of that was especially difficult. So at that time, I guess I was also, you know, I'm dealing with this physical health stuff, but more pressing for me was my mental health.

Matt: We're talking about sort of 2019, 2020, 21, is this sort of the period?

Ebony: Yeah. I think I had gotten to the point probably 10 or so years of dealing with mismanagement in the health department, having to go to free GP clinics and not necessarily getting that continuity of care that would have meant that I had proper care. It really kind of added up to not very good circumstances, yeah.

Matt: And how was that playing for you, you know, when you're talking about your mental health being in a bad place? I don't want you to say anything that is just too hard for you, but I would love to kind of get a sense of like where you were at, because I also want to understand how you came out.

Ebony: Yeah. So I was like in and out of in and outpatient facilities. And it's not actually something that's really difficult for me to talk, I guess, about necessarily, but I guess right now I'm trying to gauge your mental health and your capacity to listen to this kind of stuff, because I guess, you know, I was talking about that in my childhood, that I'm always kind of scanning the world to see when it's okay to talk about things.

Matt: Is it a receptive audience?

Ebony: Yeah, is it a receptive audience, but also is what I'm going to say, going to put you or even the listener into a state of mind that they're not necessarily able to deal with at the moment.

So, yeah, like I also hate the hate the term trigger warning because I think that it stops people from talking about lived experience. And especially because we never actually know what can trigger somebody. You know, you might be frightened of moths and then you watch a movie and it has a moth in it. And that can put you in a deep dive for quite a while.

But, yeah, my mental health was not doing well. I had taken an attempt to end my life. And I think mostly out of desperation. I was terribly, terribly lonely. I think that was the main thing that I was dealing with outside of everything else. Like, you can deal with everything if you have community, which is something that I have learnt. Sorry, I'm getting a bit teary.

Matt: I can see. When you're talking about things that trigger you, I think just sometimes being back in that place can trigger your emotions in a way that is just intangible. You just don't even know that it's going to happen. But just by reminding yourself of that state of mind in that moment, it just takes you back emotionally to that moment, doesn't it?

Ebony: And it's funny, though, the reason why I just got a bit teary, it's not necessarily because I was thinking about the time or what I was experiencing then, it's how much has changed. And that I was so lonely, and now I can't get a time to myself, you know what I mean? Like, I'm surrounded by people constantly.

Matt: I was just, you know, Liam and Jordan, who are your co-founders in We Are Studios, are right next door and probably can hear all of this. And I was just thinking about being at Liam's opening last year in Rozelle and just the glorious sense of community, I was just a fly on the wall watching it all happen, but it was so great. You could tell that people felt so safe and so comfortable and so part of something there.

Ebony: Yeah, I like to say that we're rent-a-crowd. Because whoever has something going on, everybody will come. And I think that's because we've all experienced that loneliness and I guess even if it isn't necessarily, like, no people around, it's feeling isolated from communities. Because we've all felt like there's a million people around, but you still feel like you're not part of something.

And I think, you know, it's an epidemic that's something that's affecting everybody right now across the board. But people with disability have been dealing with that in spades forever. You know, we were locked in basements and put into mental health institutes, into institutions rather than our family, you know, dealing with us and up until the ‘80s that was happening. And if I was born, you know, a decade or so earlier, that's what would have been happening to me.

One of the best things about having a community or people that understand you is them allowing you to then understand yourself, because a lot of people, I think, come into these spaces not knowing who they are or not knowing why they are. And then they get to see somebody who's had a similar experience or who has felt the same way as them and articulated something that they haven't ever been able to conceptualise or articulate themselves. It's an a-ha moment, because then they're seen. They can see that what they've experienced is real and that they aren't alone.

Matt: I know that you're talking about community when you say that, but that's also the job of art, isn't it? I was thinking about great songs and on the most literal level, they can put your feelings into words in a way, that that's what great songs often do. You know, wow, that just captures my experience. But art of all kinds does that right?

Ebony: Yeah, that's one of the reasons why I think I make art about my experience of disability, in particular, is because even, you know, I'm having this conversation with you now and I'm talking about all of this stuff and I don't do this.

So yeah, I'm very choosy with who I share my story with and like you're a story caretaker now, you have my story and I'm sure that you will look after it as you have looked after other people who have been part of this as well.

Matt: When you were in this moment, you've just talked about how tough that moment was and you've talked about the lack of connection, that feeling of loneliness, which, you know, I think to a certain extent, everyone feels that. But there are, that's a spectrum in itself, right? And that can be the most profound and hardest experience. And somehow you got from there to where you are now with this incredible community around you. How did, how did that start? How did that move away start?

Ebony: Yeah, so, um, like I had nothing to lose. I was at my lowest point. So I just, I kind of got rid of expectations that I had of myself. When I talked before about going into design because you, that's what an artist who wants to make money does, that was actually something that was very much at the forefront of my mind.

Having grown up in poverty, and I still live in poverty - I say poverty because, you know, I've said low socioeconomic background, I think is a very palatable way of saying poverty. And it's not for us, it's for other people to feel more comfortable. And, like, I wanted to be able to buy my parents a house to live in. I wanted to be able to make sure that I could look after them, um, and myself at a older age, because I had seen how difficult that was and still is. I think I'm probably one of the only people on the disability pension that pays some of their parents rent.

So that's why I went into that space and I was able to get rid of that. I was just like, I can't do anything right now, so it kind of gave me the freedom to just try whatever and see what's up, because I didn't want to be here anymore, right? So I was like, if there's something that can make me feel like there's something to live for, I'll give it a shot. So I enrolled into, well, I guess I got selected for a service. There was a program running at a service provider that Liam, my co-founder, was part of. From that, a lot of the artists who are currently in our studio today started there as well, and for the first time in my life, I felt like I had a voice, I had a community, and that what I had to say actually mattered.

Like all fairytales, there are ups and downs. There's a reason why we are studio exists today, because we had a model for what didn't work. I think the learnings from that were that people with disability need to be at the helm of things because no one else is going to fight for us. We always come last in a lot of priority areas, which I'm sure you've seen and experienced in your life, too. Working with people and people in our families with disability, you see it every day, but it happens in every space and every area, and especially in the disability community. And that's why they say, you know, identified positions matter because we need to have agency and determination about what we do and what we're part of, but also, you know, where the money goes, where the priorities lay and how that looks.

So it didn't end up in a good place. That space was taken away. That lifeline, that wasn't just for me, but for so many people. And I just had that little taste of it.

Matt: We're talking about one year, right?

Ebony: And it was like, no, now it's done. And that was just like the rug had been pulled out from underneath me. So I was like, there's one thing that I am very good at. And we're talking about that black and white thinking again, is that I have a very strong justice seeking personality. So if that was going to be taken away, it wouldn't go away without a fight. And if I couldn't make that work in that space, I was going to make it work in another space. And thanks to my partner who I bullied into coming with me, and Liam, who came along willingly. He was there for the ride, and they both worked so hard to kind of make that dream come true, I guess.

Matt: No great idea or project emerges fully formed. Can you talk about the first moments that what was to become We Are Studios when it started to take shape?

Ebony: So we had a group of artists who had become family, really, at that point, who had amazing practices and so much to share, but still in that space wasn't being shared with the world, either. And I guess for me, the kick in the pants to kind of make it happen, because I wouldn't probably have done it for myself, was that there was other people there with me, and I needed it to work for them.

Matt: This is going back to that sense of not necessarily advocating for yourself, but being prepared to step up for other people.

Ebony: Yeah, so I couldn't see that space go. And even in that space as well, I saw that their voices weren't necessarily being prioritised, or given the platform that they deserved. And disability arts in general, it's often put into its own little corner, and our audience is sometimes supposed to be people with disability, and that's not how it should be, because their art is amazing and palatable, I guess, but also groundbreaking to the wider art world as well. I think there's definitely a bias there, some ableism about the quality of the work.

Matt: But also sort of a lack of awareness of the history of art, right?

Ebony: Absolutely. Well, it's that, you know, I'm lucky that I was able to go through tertiary education and things like that. But most of the artists and people I know in this space, the reason why it's so important is because they never had those opportunities before. They'd never had like formal arts education or if they, any education to begin with, like it was foundational for them to be able to create and have a voice finally.

Something that I've been thinking about recently is also, there's constantly talk, you know, with government agencies and wider audiences at large about pathologising disability arts. They're like, what is therapy and what is art? And where do the two meet? And a lot of service providers, for example, will do art therapy. And even with the NDIS funding, different things like that, or not funding them as the case may be. I'd say 99 per cent of the artists in our studio, including myself and, you know, I was the first to scream this from the rooftop, is that this has been the most significant intervention in their life, full stop. You're talking health, wealth, opportunity, but having a voice. And we're constantly told that, you know, you have to separate disability art from therapy or from a pathologised version of that. And why does that have to happen for artists with disability? When if you ask me, the reason why, you know, people go to art school, it's therapy.

Everybody wants to have a voice, right? You want to be able to express yourself. And what that looks like might be different for, you know, someone with disability versus someone without disability. And I should also clarify that I include deaf people in that as well, deaf and disabled.

Matt: When you think about the work that We Are Studios does, you know, in a way, it makes sense for government providers to organise things into neat kind of sections. But the other way of looking at it is, do you have a project that works and is making a great contribution? And, you know, why have to break that down into a neat little bracket? Why not just think about all the great things that that thing does, you know, across a range of different areas? You know, I sat down with you and Jordan for a paper I did. One of the things I came away from that conversation was a real sense of, you know, we talk about intersectionality is, you know, it feels a bit academic in a way, but there is just an intersection between a whole bunch of different communities and needs and passions and bits of self-expression and all those things are kind of just coalescing in one room and you're kind of doing a whole bunch of jobs, while everyone's just making great artwork that they're really excited about and passionate about. And it's, you know, why have to simplify it down to all of these different buckets that you might have to get funding from?

Ebony: Yeah, and I think about it in terms of mental health as well as that, you know, the reason why a lot of these people, their lives are changed, the artists, is because they're valued, right? And they're valued because they have a voice, yes, but also because their work's being seen, they're being treated as professionals, they have a job, right? They have something to look forward to. In life, you need long-term and short-term goals. And for a lot of people with disability, that's not necessarily something that they have in their lives, because our lives are so up and down all the time and capacity wanes and things can put a spanner in the works as well. But yeah, I think employment, like we have people who have never gotten a paycheck in their lives for the first time getting one at like 65. And you can't underestimate how much that can mean to somebody.

Matt: Yeah, and just that sense that not just the paycheck, but, you know, it is a path to excellence and creating something that is uniquely not just expressing yourself, but expressing it in a way that is like creatively excellent. And, you know, couldn't come from anywhere else, couldn't come from anyone else.

Ebony: Yeah. And something that like is a pet peeve of mine, that I hear all of the time from people is, oh wow, the artists are really coming along in their creative practice, or, you know, the studios really made a difference to the quality of their work and things like that. I just want to shake them because I'm like every single one of our artists had the capacity to make the work that they're making now all, all along. We haven't made that happen. We've just given the space for it to happen. You know, these are people mostly who are again living in poverty. Australia does not give a living pension enough to survive on. So for them, if you're talking about purchasing medications or purchasing food or purchasing paint, there's a choice to make there. And one isn't more nourishing than the other at times, you know, and sometimes you do choose paint because that is what will feed you more at that time.

Matt: If it gives you hope, it gives you a sense of accomplishment, yeah.

Ebony: And, you know, people make a lot of assumptions because they've sometimes, I guess, never experienced that or they assume that materials and things like that are subsidised or paid for. But no, the amount of my own money, and I don't have any money that I've put into this place is, don't tell anybody, you know. When someone doesn't have something or lunch or whatever, I can't buy it for them.

Liam, who's one of the co-founders here, but also an artist himself, an amazing artist at that, has kind of instilled in me that, you know, all of the stuff that I'm doing outside of literally making work is my creative practice. Like, and that's been quite a transition for me to think about, because it's true. I like to think that there's like a little part of me and a lot of people's work here as well, but they're the reason that I make work.

I have an exhibition coming up later this year at the Blue Mountains Cultural Centre, and it's really a, I guess, a think piece for cultural institutions at large to say, hey, there's this significant portion of the population who don't necessarily feel welcomed or engaged in creative spaces that should be sustaining them or allowing them to feel like they have community, and you're missing out on so much. And how do we foster that? Like, that's where I want my work to go, and I wanna be provocative, but cheeky, and make it get them in through something palatable, but hopefully change some minds along the way.

Matt: Yeah, you don't change people's minds unless you engage them, right? And you've got to find a way of having them listening, or watching, or engaging in some way before they can, before you, if that's your, because not everyone's mission is to change people's minds. And so that's, that setup is only important if you wanna change people's minds, but if that's the job, then you've got to get them there.

Ebony: Yeah, I think one of my missions, of course, like, I feel like most people would say, yeah, I support people with disability, right? I can't imagine there's a lot of people out there, and post a child for, I'm anti-people with disability, but the lack of support really is what that is. You know, we're not included in a lot of policy work, we're not included in a lot of spaces, and some of the things that, you know, are to include us are really superficial. They don't go deep, they don't actually think about the culture of a place, or making real systemic changes. And there's no legacy there either, you know, it might be one person making a difference, and then they're gone and no one cares about it anymore. So, it's not necessarily even making changing people's minds, it's making them think about it full stop.

Matt: And also not be afraid to step into those conversations as well.

Ebony: I feel like that is a real blockage.

Matt: You know, when you were talking before about conversations you've had with Liam about your work not just being, you know, the visual artwork that you do, but the whole thing, it made me think about the New York artist Gordon Matta-Clark who his work was, you know, he did things like slice through buildings and, you know, just kind of incredible things back in New York in the ‘70s and ‘80s. But he also set up cafes and did all these super interesting kind of community building things that people in the art world didn't really think about as art. But he brought together, you know, he had lots of artists working in a cafe that had whole foods and that kind of thing. And so there was this super interesting thing about reimagining the role of the city and the community in the city and that thing happening around art and food and what have you. Obviously, that's totally different from your project. But I think I really like that idea that the work of the artist is the work that the artist does. And, you know, your work, with many others here is building something that's quite unique and special and having such a huge impact on people's lives and maybe the result of that artwork, you know, I'm really interested in your specific artworks and pieces that you show in galleries and so on. But that bigger artwork, you know, that's going to play out over a long period of time, right? Those connections and relationships and what is born out of that.

Ebony: Yeah. And I think something that I also think about in terms of my practice is legacy. Not that I imagined that I, you know, have to have a legacy or anything like that. But like, there was a long time there where I thought, yeah, I wouldn't exist. I wouldn't have, you know, children or anything like that. And that's something a lot of people with disability deal with is not having a future or one that you can kind of predict or make plans for. And I still have that. Like, there's lots of things that play on my mind that don't, I guess, or maybe they do on the average, Joe or Julie.

So, I want to be able to make real change that outlasts me and share that with people because what use is it for me to be able to change my life and I have a great life and, you know, that might be due to the privileges that I experience. So, you know, as a white presenting woman, I'm able to fit into a lot of spaces and places that some of my colleagues or people in the industry aren't able to necessarily feel as comfortable or welcomed in. And, you know, every room has to have a first, right? Like, I will be talking to one of the other board members and an amazing artist in the studio, Emmanuel Asante, why do I always have to be the only person of colour in a room? I’m like, well, that is a horrible experience and not something that you should have to deal with, but it's a reality that you're dealing with.

And sometimes you have to be the first, right? So that you can open the door for others. And it's hard and it sucks. And sometimes this door gets slammed after you, but all you can do is try because that's actually how you create legacy through those small things. And to me, that's the impact. And I guess I make my work not for me. I make it for other people. Not that I know what other people want to see, but in the hopes that it will make them feel good.

One of the artists in our studio, Kiri, she's got two daughters. And they're happy for me to share this. Also, they’re neurodiverse, too. And so for them, being able to be around a bunch of adults who have figured a life, whatever that looks like for themselves and have a community has been really valuable to them. But I made my artwork thinking about them because they're also spies, right? And when we had the opening day for it, I got to see all of these children who were so involved in what I had created. And it made everything worth it. Like, they had given feedback and things like that on online and Blacktown Arts had shared that with me, is that like some of the feedback from parents and things like that, was that for them to be able to see that and to see what somebody had created who had dealt with those struggles and that different ways of thinking and seeing and perspectives are valuable was really, really great for them.

And yeah, I think if I had that, then things could have been easier.

Matt: It's hard to be what you can't see in the world, right? And as hard as that has clearly been for you, like it's also an incredible thing that you can provide that space for like, you know, a next generation of younger artists or, you know, who knows what they're going to be, you know, scientists or bank tellers or whatever, but to have a place where they feel safe and feel like they can have an aspiration to something great.

Ebony: I just want them to be curious to ask questions and to not accept those answers as the truth as well. The world is nuanced and I'm a black and white thinker here as well. It's literally on the diagnostic criteria, but I have had to learn that there are so many versions of what's right.

Matt: Ebony, it has been so great to have this conversation with you. Before I finish, I have to ask you three questions. What's keeping you up at night at the moment?

Ebony: That would be Jordan. He just does not stop snoring. No, that was a terrible joke. What is keeping me up at night at the moment? Probably that legacy thing. Thinking about a lot of different things I'm not allowed to talk about yet.

Matt: They're all secrets, right? Someone said it was a secret.

Ebony: They did, unfortunately. I've already tried to tell other people, but no, I'm not allowed to share that one. But, you know, stay tuned because I think there's something that I and some other people are working on right now that I think will be a big game changer for the legacy of people with disability, both nationally and internationally. And I hope that it can make some waves.

Matt: Amazing. If you were doing this interview, who would you be talking to?

Ebony: Who would I be talking to? I'm going to bring it back home to the studio as well. You think I'm obsessed with these people? I really am. Actually, this could also answer the question to what keeps me up at night. So I'm thinking about Grazia, who's one of our artists in the studio, who's an amazing artist. She has, I think, a lot of stories to tell, and hasn't had the opportunity to tell them, and I can't wait for her to share those.

Matt: What gives you hope?

Ebony: Seeing people actually make change. Words and promises and priorities are one thing, yes, yes, yes. But action, that's where the juicy stuff is. And it takes a long time sometimes, but not necessarily everything. Action, yeah, that's my answer.

Matt: Love that. Thank you so much for doing this today. If people want to see your work, where do you send them?

Ebony: Oh my gosh, this is where I haven't posted anything. Actually come and talk to me. I'll talk to you. I can show you my works on my computer, but also there is a show happening right now at Blacktown Arts that's open for another three months. There is my future exhibition that I spoke about at the Blue Mountains Cultural Centre and then lots of other random things happening in and around that as well.

Matt: I guess jump on the We Are Studios website or the Instagram.

Ebony: Yeah, that too. You can talk to me if you want to via my name, which is Ebony Wightman on Instagram. We Are Studios, that's also me as well. So yeah, I'm there.