Welcome back! Once again, an interview is available. Today, you can read about another artist who became a member of #WeShallNotBeRemoved around the same time as I did. This is the final piece I’ll be writing that should be made available on both my own blog and #WSNBR’s website too.
This post involves a great chat I had with Justin Edgar, a successful, experienced and creative filmmaker. He’s made his efforts to grab the public’s attention, and, along with many others, helped trend the term end ableism during lockdown in June 2020. In the past, he’s worked with various other disabled filmmakers, and has been involved with projects for the greater good of many other disabled people too.
Indeed, this final interview I’m providing for the UK Disability Arts Alliance takes some time to read and is actually the longest one yet. Still, it is very interesting! I simply got a little lost as Justin answered my questions in a natural conversation as time continued.
Although my questions aren’t all placed out and answered directly, this interview answers the questions that I set up before it began. He tells you about his background, how he’s been involved with #WSNBR, and how his own work has developed over the pandemic era. He also speaks about artists he’s worked with recently, which other arts mean the most to him, and what work he’s looking forward to producing in the future.
In terms of collaborating with others, how much would you say you’ve been involved with #WeShallNotBeRemoved since the pandemic was thrust upon us?
I think I first heard about #WSNBR through Andrew Miller. He told me about it, I saw plans coming up, and downloaded the Slack app because I hadn’t used it before. I kind of engaged with it via the film channel, by and large – posting things we were up to via my film company 104 films: our activities, what we were doing. I was also posting things about the progression of my visual arts projects.
I suppose when using it as sort of a networking thing, it’s nice to know you’re part of a movement, and that you know what’s going on. I feel it’s a really good kind of hub for people to come together. There are obviously other disability arts hubs that are good and useful, like Disability Arts Online. But what I like about #WSNBR is that it is a group effort, it feels like we’re all in it together, and the voice of the individual is really heard, which is interesting, so it works well on those terms for me I suppose.
In terms of pushing the films agenda of #WSNBR, I have attended various things, such as a set up film and video focus group, which we had the second meeting for a couple of weeks ago. It has been really useful. And I’m thinking, if so many people involved in my area and the other areas of the arts world that I don’t know as much about have an equal amount of stuff happening around there, then I think it’s exciting – that it’s going to have quite a big impact on the disability arts scene.
So, that’s been my involvement with the alliance so far, and we’ve had other collaborations over the past year. We’ve got a lot closer to the galleries we were working with for the Reasonable Adjustment exhibition – The Attenborough Arts Centre, The Arts House – and have explored ways of getting the exhibition out online. We’ve also worked with other artists.
One of the things that has been quite useful for us is the new project we’ve been putting forward which is to build two ceramic Staffordshire dogs in Stoke-on-Trent city centre, which will be 15 feet high. They’re kind of the ornaments you see in the home, usually made my Victorians, and disabled workers actually painted the eyes and mouths on these things. They were on the production line in the mid-19th century – and the idea is to reflect that in these dogs, to make them disabled, and have them ripped large in the city centre. So, it’s one way of re-evaluating disability history, which has kind of been forgotten.
So, #WSNBR has been really useful for that as well – for networking with ceramists, and other artists, because ceramics isn’t a sphere of art that I really know much about. I’ve been able to access their knowledge and talk to them about what to do and get lots of feedback and insights.
So, I think #WSNBR’s brilliant! I think it’s been a good first year now, almost.
Yeah, I think it’s been great as well. I’ve enjoyed learning about these new ventures people are going on and expressing myself – it’s been enjoyable.
Well, I know a bit about you Justin, have viewed an exhibition. But can you tell us more about how your career has unfolded?
Yeah, of course. Well, I’m nearly 50 now, so I’ve been around for a while. I started off my doing an art and design degree in the early 1990s, and when I was on the course, it was specialising in film and video. I’ve always enjoyed making films and that’s always been my passion in life – making cinema, and to a lesser extent, TV.
But I was on this course with my hearing impairment, and the head of the course knew this because I would take a dictaphone into the room so I could record lectures so I wouldn’t miss anything. So, I would sit at the front, and he approached me and said the local ITV station, Meridian, have an opportunity for someone with a non-visible disability to come in and talk about it, and make a little video diary. In the 90s, everybody was interested in making video diaries; recording stuff on camera.
And I’d never considered myself to have a disability before, but I caught an interest in that fact. I started to look into the disability right’s movement and understand there was a whole world of disability unfolding. It was around the time when the DDA was coming about, and I went along to a few protests, and started to get interested in being and identifying as a disabled person and being a part of that movement. So, my passions, disability rights and making films, are the two things that have guided me, really.
So, I got out of film school in the mid-90s, and it was a time when people were making their first feature films. I was working with Shane Meadows on short films, and he got films off the ground. And, I thought, “well, if he can do it, I can do it”, so I managed to get a film off the ground on Film4, as it was a time when the lottery were putting a lot of money into new British directors, so I ended up making my first film. It got released, it sold around the world, I went to Cannes Film Festival, premiered it and everything like that.
Sounds positive to me. Did you enjoy it?
It was a great experience, but the film I wasn’t really happy with. I went back to do more idiosyncratic stuff that just had a bit more meaning. Out of that grew this interesting disability and films so I set up my own company, which is called 104 films. The intention was to give opportunities to disabled filmmakers that just weren’t existing at the time. If you were visually impaired, happened to be deaf, or had mental health issues, these were things which just weren’t accounted for at that time. The voices of these people weren’t seen as important.
And we were quite lucky early on. We got a bit of money from the BBC, and the UK Film Council, the precursor of the British Film Institute, to do a series of short films with new disabled filmmaking talent. We had some great people come through it, like Charlie Swinburn, who’s now writing for lots of big TV series’s, we had David Proud, who ended up in Eastenders as the first ever disabled regular. We had William Major, who went on to be series producer of See Hear, the deaf TV programme that highlights the latest issues.
So, we had a load of interesting talent come through on that scheme. And then, when the Tories came in 2010, the UK Film Council got shut down, we got rid of the scheme and austerity came in. A lot of the great work we were doing was put on hiatus and pause for a little bit. And now, mainly over the last decade, I’ve been doing a lot of my own directing work and have made three feature films and TV in that time. But now it seems like there is a paradigm shift back again: everybody is very interested in disability. In terms of arts and film, that’s what people are identifying as disabled, more than ever.
There’s been a huge boom in people with non-visible disabilities being proud of that, and I think that’s great. There’s also a culture shift that’s going on. But I also feel like the organisations are putting the money where their mouth is, and you see organisations like Netflix putting money into disability programming and talent behind and in front of the screen – programmes like Deaf U, for example, so I’ve really backed it on that front.
But coming out of the austerity period towards the end of the 2010s, although it got interesting, it felt like quite an angry period for me. I wanted to tell a story about that period – and I felt I just couldn’t tell it through a film. There was something about the construction of film, a phoniness, a mistruth. So, in order to tell this story that was so real – you know, the fact that 130,000 people starved to death because of bio-neglect, because of austerity cuts in the UK, and then coming into this COVID era the fact that people with learning disabilities have been ignored, for example – this government, and COVID has gone through them like an out-of-control fire. It’s accounted for two thirds of the deaths, 66%, according to O&S, among people with disabilities. These are real figures that we’re not making up, these are people’s lives that have been lost, and I felt there was a story that had to be told about that.
So then came along this “What if?” scenario. I met some amazing people when it came down to getting the DDA up-and-running, and it was really interesting to ask the “What if?” question. What if people like that had taken up arms? What if they’d said: “this is an armed struggle: we’re not being listened to, huge numbers of people are dying, something needs to be done”, and if that frustration had boiled down into violence. And, in doing that, in creating the Reasonable Adjustment, a fictional disability rights movement, I felt the key question: “why would you make something like this up?” In examining this question, people could try and come to a conclusion of what we need to be talking about regarding disability and what’s been happening to disabled people over the past 11 years.
Well, I attended the exhibition in Wakefield, and found it very interesting.
And it wouldn’t have worked as a film. It wouldn’t have worked as a documentary! Documentaries are too earnest and too truthful. It wouldn’t have worked as a narrative film, because of the falseness construction of narrative that’s required to make a fiction film. So, I went back to my kind of “art student routes”, I suppose. I decided to do it as a visual arts exhibition with several components, and having done a lot of this sort of thing as an art student, I felt if you replicated the image through archaic means, then it makes it more believable. Partly because people will think, “Oh, it’s old. It must be true.”, and partly because people would think “Well, why would you ever bother on doing this, ever?”
So, for example, we have a lot of newspaper articles, which are written on microfiche. Obviously, microfiche hasn’t been used for years and year, but when I was a student everything was certainly on microfiche, in the pre-internet days. I think there’s an advantage to set this as pre-internet as well, because it’s kind of more believable. People can’t Google it: there are all sorts of things going on in that period that people just don’t know about. The animal liberation front were very active sending incendiary devices through the posts, they branded someone as you would brand an animal, a cow, and they killed people, and Reasonable Adjustment – in the fiction of the exhibition – never did kill anyone, and we wanted to make it believable. It seemed more believable, although they never caused anyone any harm, didn’t kill or injure anyone.
We also shot a fake television documentary, reported from the period, so we had to shoot that on 16 mm film, and we did a replication of sound from that period. We used people who weren’t really famous actors; not all the disabled actors we used in it were hugely well known, so people couldn’t just say, “Oh, I just saw that person in something else…”
So, there was a lot of people who really believed it. I was kind of shocked that everyone apart from those who were involved in the exhibition making or knew something about it all thought it was real. So, I guess after you do something like that, you’ve got to go with it. We clearly had some very intelligent people who did think it was real, and we had some people who were really annoyed and angry! However, I think if people are getting annoyed and angry at the fact it’s not real, I think they’re missing the point a bit. What I want them to think about are the poor people’s statistics: I don’t mind them talking about the reality of it, as long as they still talk about what it means. A lot of people who believe it’s real or not have been doing that.
One of the key talking points has also been the language used. Some of the derogative language used was common language at that time, that was used to describe disabled people, and people have been shocked by that. Sometimes there’s been guilt in part of the non-disabled audience admitting they did used to use those words. The Spastics Society was known as that until 1994. And this is stuff we have to talk about, think about: I think it’s important. But I appreciate that some people can find it disturbing and shocking, this language. But it is part of our history.
Well, I think you’ve answered quite a few of my other questions as well. You talked about going back and using other visual arts. You’re obviously more of a filmmaker – that’s more of your passion – but I was going to ask you which other disability arts mean a lot to you. But you’ve obviously used a lot of crafts in your exhibition.
It’s interesting really, because the art I do is conceptual. I’m not a great artist but a lot of this included me telling a lot of other people about what I wanted. The one bit I suppose I was very “hands-on” with was the film. I was able to make a lot of that myself, although I needed the crew, the camera person, etc. I suppose I’m attracted to my arts in that way because that is how films are made. It’s an incredibly collaborative art form. You work with very creative people around you and you don’t do everything yourself. So, that’s been my approach to visual arts, I guess.
And my new project which is to do with the Staffordshire dogs, that involves ceramics work, building two dogs fifteen feet high, is very much a collaboration. I have to work with conceptual ceramics specialists, and I have to work with all sorts of people.
But what I would say is that even if you’re painting a picture, writing a novel, and doing everything yourself, you’re still collaborating with people because you need to bounce ideas off people, everybody you meet in your life helps form that artwork! So, all art, to a more or lesser degree, is highly collaborative.
I certainly like to work with the community. In Reasonable Adjustment a lot of the artworks posters we made with a group called BrightSparks. They led the print job, and they contributed to the exhibition by creating posters, other kinds of artworks, the designs. So, there was a huge community element to it. I almost felt as if when we were doing that, there was a sense of us creating a movement – because it was about a disability rights movement, and it was interesting to get everybody involved with it.
And then it went against the world when it turned into a digital exhibition, because we got some money to show it online as well. I think it works well online, but what we did was small, but effective Facebook marketing. I think it went out to about 30 thousand people when it premiered at the Southbank centre – the online Southbank centre festival. And, what was really interesting was that there was one group that really hijacked it, and hated it. I’m still getting to the bottom of why they hated it so much.
They felt a need to undermine the work and decry it as false. They took on all sorts of direct action themselves, as Reasonable Adjustment might have done, for instance. They hijacked it at a part of the Q&A we were doing as a part of the festival. They started changing Wikipedia pages related to the exhibition and myself. They texted my film and TV agent, saying that it was wrong to create these false truths.
Considering how much we’ve been neglected, I’d say that’s harsh.
But it was interesting, because I loved the engagement: it was always meant to have that engagement. I think as a gallery-based exhibition, I think about 500 people saw it (or something like that) at the Arthouse in Wakefield. Whereas online, like I said, 30 thousand people saw it. And that was the tip of the Iceberg; lots of other people might have seen it since. So, a huge amount of people have now encountered and experienced those debates. They’ve become part of the artwork – especially the people who hijacked it! Because it’s like the tail wags the dog, or we’ve made a tale about a disability rights group, and it’s just been hijacked by a disability rights group!
One of the things it highlighted in particular came up on conversation I was discussing it with Jo Verrent. She said “I saw so much inner fighting in the world of disability rights. Everybody is precious.” They say, “This is wrong” or “That is wrong”, and whether or not you should use various language. That was kind of the part of the conversation. It may be bizarre or not that bizarre that that has actually been proven to be true.
I’d like to do something about it. One of the things I’m thinking of doing next, is doing a documentary about the way it was received – both the good and bad. Not just the people who made the most noise, but those who really loved it, because some people did enjoy the humour and cheekiness of it, and that’s been interesting. I thought a lot of people would just think it was a rip-off, but a lot of people did believe it.
I also got banned from Facebook. I don’t go on Facebook anyway, on moral and ethically grounds, so I don’t have a presence on it, but we had set up a Facebook page for the marketing. But we got banned for using hate speech. Someone complained about the language we used in it. After we appealed, the Facebook Page was reinstated, which made arts news in a few places.
I thought that was really interesting, and that Facebook should be an arbiter of hate speech. These are the people who got Donald Trump elected! When they start arbitrating what hate speech is, we’re all really f**ked, I think!
Well, is there some way we can still see the Reasonable Adjustment exhibition online?
Yeah, you can. It was a question when I was getting a Podcast for Outside In, last week. They were really good with their disability arts stuff, and have just started their own Podcast. If you go to Facebook, there’s a link to it from our page, and you can go online and read comments about it.
But, we left the Arthouse in 2020, and then it was taken to the Attenborough centre, and then it was due to tour to other galleries as well. But they pulled out of the tour. It’s still at the Attenborough arts centre, and we don’t know what to do with it. But I’d really like to see it in another place, so I’m hoping there will be opportunities at some stage to show it.
It’s a problematic exhibition in some ways, because it’s quite big, there’s a lot of fragile material involved, and there’s also some imagery that people don’t like. It’s not for everybody; in public spaces, it’s difficult to see it being shown, but I think for the right galleries it would be great. But I just assume that for a new artist, or someone who is new to arts like myself, I don’t know how many opportunities there are going to be to exhibit it in formal gallery spaces in the next few years. I suppose we’ll have to see.
So, I’d like to, but I don’t know if I will.
Okay, well another question. Whether it relates to the arts or not, what do you look forward to doing after the pandemic?
Well, I think a lot of artists have an internal life, because when you make your own art it’s about using yourself and looking inwards, and as I sit in this room, I make stuff up. So, I’m okay with that, but I’ve got two small children, and I think it’s very difficult for them – although they’ve got this life of the imagination, I think it’s quite damaging that they can’t interact with wider society. Just things like that that they haven’t been able to do so much over the past.
I’d like to travel with them as well. I mean, my first daughter, I’ve done so much with her in her first year of life, like go to Amsterdam, and Poland, filming with me. She’s been all over the place, and I think it’s a real shame that they’ve been locked up and I just want to get them out there.
So, as a shorter answer, I’d say post-pandemic, I think it’s about broadening the cultural life experiences for kids.
So, do you think it’s not had that much of an effect on you personally, when it comes to making your films?
Well, I think if you’re an artist or a filmmaker, I think you live in a constant state of financial or creative existential crisis. Or I do, I don’t know whether that’s just me! I kind of constantly feel I’m on the edge anyway, so creatively, the pandemic life was nothing new, really, in terms of locking down.
I’m aware of mental health, and I do have mental health issues too, but I wouldn’t say that this pandemic has been a particular issue for me personally. It’s not affected me in that sense, thankfully, because I know that there’s a lot of people that it has.
I also think this pandemic is a social model written large. If the rest of society is going out, partying, going to raves, you’re going to get loads of transmission, and loads of people are going to die. But it’s kind of isolated everybody, and I think the non-disabled have hopefully realised a little bit about what it means to be disabled and tied more to the home. This might be because of mental health issues or because of mobility, and I think that’s really interesting.
I’m thinking things might get back to normal, and people just see us as disabled people, but we’ll see. Maybe the optimism will change with this insight into the social model.
It was great to talk to Justin, even if he gave a lot of words to transcribe! What he mentioned to me via Zoom was so interesting. He’s an experienced filmmaker who’s lived through various situations and has drawn attention to them in the past. His disability doesn’t cause him too many problems, but he clearly understands that disabled people generally deserve better human rights. He’s exploited our frustrations with the arts he’s created in the recent past, and his work can be viewed online today.
Head to the website of 104 films if you’d like to find out more about Justin’s film company: the UK’s leading production company and training provider focussing on disability. There’s also the Reasonable Adjustment online website to head to if you’re interested in learning more about the exhibition he originally set up to be viewed in 2020.