Podcast

Interview Date | April 9, 2020

JILL: Welcome to the DisTopia podcast, where we look at disability from the inside out. [peaceful music fades in] My name is Jill Vyn, and I’m the cohost of this podcast with my friend and colleague, Chris Smit. 

What you are listening to now is the first of two interrelated components of our My Dearest Friends project, both of which have been generously underwritten by the Ford Foundation. The My Dearest Friends podcast, which is produced by DisTopia, is a series of recorded conversations with disabled people about their individual experiences with the COVID-19 pandemic, and the personal, cultural, and political alterations it has triggered. These informal conversations give our guests the opportunity to share personal experiences of sheltering in place and to engage in conversations around deeper questions raised about the value of disabled people, the core values of the disability culture, as well as our hopes, fears, and strategies for living an authentic and pride-filled disabled life.

The second component of the My Dearest Friends project is created in partnership with disabled artist Oaklee Thiele, who is creating black and white illustrations that represent our collective response to our new and uncertain realities as a disabled community. Designed as an open invitation to the disabled community around the world, we invite all of you to participate. More information can be found on Instagram @MyDearestFriendsProject, Facebook, and on our website, DisArtNow.org.

As is true for many of you, our desire for this project is to share our experiences as a disabled community, to disrupt ableist beliefs, to celebrate a culture whose lived experience of disability necessitates flexibility and creativity, and to validate disabled voices and perspectives in the midst of the COVID-19 pandemic.

[peaceful music slowly fades into gentle electronic music break]

RUTH: I’m now, Ruth Fabby! Known before as Ruth Gould. But I’ve been married since I last saw you guys, and I decided, because my old name was an old relationship which is no longer existed, to take on my new husband’s name. And I like the fact that I got an extra syllable in my name ’cause I’ve always had monosyllable names. Now I’ve got a double syllable for my surname. So, Fabby, which is a great name because I’m fab Fabby.

CHRIS: [laughs]

RUTH: Yeah.

Are you still recording now? ‘Cause I really want to be able to catch up with you guys a lot more because we worked really closely. I mean, this time five, six years ago, we were in Grand Rapids with Art of the Lived Experiment.

CHRIS: Yeah.

RUTH: It’s gone over really fast. It just launched, if you remember. I was leading DadaFest. I got quite ill, and things just started to get a bit difficult for me personally about what I was gonna do in my life. And I did get quite a negative diagnosis about my condition. I’ve got a lung disease, which has got long name. Anyway, I didn’t know what was gonna happen, and I came out of hospital as a wheelchair user with oxygen, being told I had a terminal condition. And then a month later, I met this amazing man, Derek, who I’ve actually known for over 40 years. His wife had suddenly passed away, and we just connected about the whole thing, about both being disabled people, the whole subject around death, dying, and things. And within a month we were madly in love. And so, I’m now married. I stopped my job at DadaFest because I didn’t think I could work full-time. But I got healthier and healthier. And then a job came up to become the director of Disability Arts Cymru. Cymru is Welsh word for Wales. People often don’t know outside the UK that Wales is its own country, and it’s a devolved government, and we have our own arts council.

And so, now I’ve got the job to be the director of Disability Arts Cymru. So, I’m working right across the country. We have a membership network of over 350 Disabled and Deaf artists. We work with all the national organizations across the country and doing big arts projects. And I’ve only been doing the job full-time since I actually got married about 20 weeks ago. But yeah, life is just amazing, the journey we’re on with life. We never know what’s gonna happen next, but I’m in a good place in the moment. Yeah, Cardiff is the capital of Wales, and it’s a beautiful city. And we actually live on a bay, so we overlook water. And it’s right by the Millennium Center, which is a huge arts center and resource. It’s very accessible. So, I’ve already got my eye on doing big events there and getting you guys over. And also behind the Welsh Parliament. So, linking in with government and things is really quite exciting. So, I feel I’m in a good place. Hmm.

CHRIS: So, what kind of projects are you guys doing now?

RUTH: I’m developing some national things. At the moment, we’ve got the DAC Art Prize, which is a visual arts exhibition called Outdoor/Indoors. I linked in with the Visit Wales Tourism Board because they’re always pushing these ableist messages about the great outdoors. Come and see the sea. Come and see the cliffs. Come and see the mountains. Many disabled people can’t just access that. And the language never seems to include Disabled and Deaf people in the same way. We’re not seen as tourists or people who have money to spend. So, it was about challenging that perception and also looking at how the Social Model can actually apply to the big outdoors. So, it’s called Outdoors/Indoors. And so, we’re asking disabled artists who are based in Wales to respond to that with their visual artwork. And it can be any genre of visual art work. And I’ve got artists who are judging it from four galleries. It’s going to tour around the whole of Wales from July. We’re still on track! We still think the gallery will be open, the first one. So, it’s gonna go right up north across in the middle of Wales with wrap-around events for artists to do workshops and things. But we’ve got three international judges as well, which I’m quite excited about because the organization Disability Arts staff are not gonna make the decisions. It’s going to be made online by these judges coming together. And there’s a prize of £1,000 for the person who wins, and then a People’s Choice at the end of the tour, which will be next February, 2021. So, that’s our first one that’s ongoing now.

But we’re also looking at how to develop the Welsh language. I’m not sure if you’ve ever heard of Welsh, but it is a very strange language. It’s actually the native language of the UK. And before all the Anglo-Saxon influences and things, everyone would’ve been speaking like [a series of Welsh syllables], really strange words. And I’m trying to learn a bit of Welsh, but the lip patterns are really difficult! We live in an area where you have to say, “[Welsh syllables].” [laughs] So, as a Deaf woman, I am really struggling! But it’s interesting, you know, the different language base. But it’s got no roots, really, in terms of a lot of the Latin and things of influence: European languages and English. Welsh is its own little place of language. But they’ve had the same sort of experiences that Deaf people have up to 50 years ago where they were not allowed to speak Welsh in the playground. And if anyone was caught speaking Welsh, they’d have a board put on them with WN, “Welsh Not.” So, the language has been oppressed, and so we’re fighting to bring it to life and also looking at how we can create a Welsh sign language. The symbol for Wales is a dragon, and the dragon has a claw that sits up. So, that’s Welsh Sign Language. So, we’re looking at creating in five years’ time a real recognized Welsh Sign Language that is not British Sign Language. It’s its own Welsh culture and we’ll use in writers, in literature. So, that’s a national project as well.

Plus we’re using online projects and doing big projections in the future and looking how we can get artwork embedded with digital technology. So, the artists here are very rich. There’s a lot of crafts. So, we’re looking at some traditional forms of art like tapestry making. So, but we’re being led by the artists, so it’s quite exciting. Because I’ve only been doing the job for 20 weeks, and already we’re making a massive inroad into things. So, it’s exciting.

[gentle electronic music break]

JILL: Yeah, we know you as someone who makes big things happen. And so, it’s gonna be really exciting to watch how you do that in Wales. I’m curious how much of that plan that you just laid out was there before you got into your position.

RUTH: I really do believe in all the countries I’ve been to, context is everything. We can’t just plonk the same way of doing art or doing disability culture the same as other places. We have to find the organic development within that community. So, I started the job part-time when I got it to develop a business plan and revision the company. And it was lovely to not have to do any of the admin-y stuff that normally comes with this sort of a job, to just think big, meet people, talk to people. And so, I was able to re-envision where we go and not do little piddly projects, but big national ones that are gonna change the scene for Disabled and Deaf artists to be seen here. ‘Cause in terms of the Arts Council of Wales, only 2% of artists disclose as being Disabled or Deaf. And Wales has one of the highest populations of disabled people in the UK. It’s dependent on the area. It’s between 28% and 38%. So, Disabled and Deaf people are not really reflected in the community here as much as they should be. So, it’s about empowerment as well. So, a lot of Social Model thinking. And just to kick ass, really! [chuckles]

CHRIS: You know, I think it’s really interesting what you just mentioned about knowing context is so important to understanding disability culture.

RUTH: ‘Cause I’ve been to so many amazing different countries. It’s been quite phenomenal to go in with Disability and Deaf communities from Malawi to Congo to Indonesia and India. And it’s what is it that connects us? And I feel I’m so aware of my white privilege. And I mean, I did have a rough upbringing in lots of senses in terms of oppression of being Deaf. But I still always had my food. I still got medical treatments. And so, I’ve got a lot of privilege in my background. So, now I see, why am I connected with people who’ve gotta walk three miles for a well for water? And how do we connect? What’s the biggest issue here we’ve got? And talking with people, what has come out again and again is people saying, “You know what it’s like to be excluded. You know what it’s like to be different. That’s why we connect. Because within our own communities, no matter how much wealth or security we’ve got, we’re always in that place of, ‘I’m different’.” And it really brought something quite powerfully home to me. I can talk to people from my white privilege background. And I find we’ve got a commonality that goes beyond those sort of things. And I don’t think that’s been explored enough within disability cultures around the world, really: how that difference really impacts us and our development.

CHRIS: Yeah, and because oftentime, when we talk about cultural differences, we are looking for that distinction moment of cultures. And what’s really interesting about the disabled culture that we are all part of is that it does have these dips and valleys and beautiful terrains of difference in different experiences. But yet at the end of the day, like you said, it’s that feeling of being othered, right? And that, quite frankly, is really being elevated right now during this COVID-19 stuff.

RUTH: But it’s quite weird. I was talking before about the art exhibition we’re putting together and the theme we wrote last year about Outdoors/Indoors. Suddenly, everyone’s become indoors! [laughs] And it’s actually putting a very different dynamic in the conversation and the art pieces that I think are gonna be created and presented at the end of the month. ‘Cause people have always taken it for granted they can go wherever they want. Many disabled people haven’t that luxury. They’ve had to be taken, or they’ve been fear: the barriers, blocks. And suddenly, people are being disabled by the society we live in in a way we’ve never really thought would ever happen before. So, it’s quite ironic in a way that it’s like, yeah, this is our world, which is interesting.

But talking about that sense of other, I think one of the hardest senses of other is how are families can treat us, if we’re the only disabled person or Deaf person in the family. It can start there, and that can be the worst place for people because they can totally be put down or overprotected. So, it’s not the big outside issues usually, the way people can be ignorant and treat you horribly. It can be those very personal ones: how you mix loving your mom and dad who treat you like you can’t do a thing, you know. That otherness, it’s very deep within us, and we’ve all got our own very unique experience of how that’s worked through. And then we gotta start talking about what is happening in the bigger world around this incredible change we’re seeing with us all.

[gentle electronic music break]

JILL: Yeah. How has your life changed as a result?

RUTH: Well, I’ve got ILD lung disease, and I am a high risk. So, I’ve been one of those people who has a letter, “You are not allowed to go out of your house for 12 weeks.” The difficulty is I’m having a bit of a lung flare up, so I have to go out to the hospital [laughs] where they don’t want me to go to the hospital because I am going to be at risk in the hospital. So, as soon as I go to hospital, it’s masks and things and then trying to go as little as I can. I’ve gotta have a C.T. scan next week and things.

As an organization that is led by Disabled and Deaf people, I knew before we were actually awarded by the government to lock down that I had to close the office down and made us all work from home, ’cause most of our work takes place online anyway with a membership that, Wales is a beautiful country. There’s places you can’t actually get across Wales from one part of Wales to another. You have to go into England and back out again into Wales and things because of the mountain ranges. It’s an amazing country, but it does mean Disabled and Deaf artists could be isolated. The transport links are appalling. So, we have already developed a very good online way of working, so we were able to just all duplicate that in our homes. So, my staff team of seven, we’re all working from home and having these Zoom conversations, which are keeping us very active. And I actually think we’re working better. [laughs] No, ’cause we’re actually more engaged with each other than we ever have been before.

So, our first thing was to close down the office, really, and let people know that we’re there, but we’re working from home. But we wanted to do a response to our artists a bit similar to what this project is for you. We’ve decided to do a project that’s online called DAC indoors and just inviting  people to write responses. In the first month, we called it Home is Where the Art Is. We’ve had some responses that way. We’ve got some other themes that will come up after next week, and we’re gonna allow artists to put their own things on. We’re not gonna censor it, and we’ll see what comes through. I think it’s a bit slow at the moment, so we need to push it a bit more because I think people are just kind of being winded about what’s happening to us. ‘Cause the regulations got tougher over the last couple of weeks, where people are not allowed out except for exercise and shops now or medical supplies. So, people are being pulled up by the piece and fined and things, so it has changed the whole dynamic about how we work as a country.

But I am very aware how many disabled people are not getting the support they need. My offices who are based across the country have been giving food parcels out, linking them to social services support where we can, so people are not going without. One of the great things we’ve actually got in Wales is our Arts Council is putting funds out for freelancers so people can apply for it. It’s £2,500 to tide them over. All the arts-funded organizations, even if they cannot go ahead with projects, they’re still being expected to pay the artists for what they would’ve been doing. And also, our social welfare pot has just expanded. What I find very fascinating is our government had austerity for 10 years and cut everything. And suddenly, we’ve got money coming out of everywhere! People are able to apply for funds. We’ve certainly got a lot more support happening here financially. What’s the scene like for you guys?

CHRIS: It’s not like that! You know, here, it’s all based on government aid from one agency, the NEA, the National Endowment for the Arts. There’s been a certain amount of money that has been allocated to them, and now that’s all trickling down slowly into art institutions.

RUTH: Hmm.

CHRIS: But in terms of the artist as individual and in terms of disability funding, no, [chuckles] that’s unfortunately not the case.

RUTH: Yeah. We haven’t got the money coming through yet. The rounds are just opening. So, there is a hiatus of nothing happening at the moment, but it will start. We are trying to put messages across to people like development property holders and things who have rents to stop asking for full rent, particularly for people who are freelancers and things. Some people are doing that. Others aren’t. But I’m from England originally, up until five months ago, and in England it’s a very different story. Wales is a bit slower in the money coming through. But I think the thing I’m so grateful for about what we have in the UK is our Arts Councils, which you don’t. Because we’re working very closely with government. Its remit is social support and housing and police and things helping business development and culture. So, that’s where it puts all its money. So, culture’s a very important thing for Wales. So, we are getting the right messages through from our Arts Council. But I’ve yet to see that hit.

There are other infrastructure issues which affect us as disabled people. This lack of personal protective equipment has been an issue, especially for those disabled people who have personal care workers who go into work with them every day. Some of them have been too scared to go in, and so people have been left high and dry without help. But other people are coming in and not really caring about looking after themselves and their personal hygiene and sanitizing and things. So, there’s a few Facebook groups being set up here with disabled artists, and The Bunker is one. People are sharing messages out. ‘Cause the other side of it that is a bit scary is we don’t know how this is gonna come through ’cause the UK is hitting its peak at the moment. We had nearly 1,000 people die yesterday. The National Health Service, there may be some directives that will say people who are seen as at-risk like myself, is it worth putting me on the ventilator if I get the virus? And so, we’re suddenly starting to have to ask ourselves some very deep questions about our quality of life and whether we can actually, [chuckles] we’ll be a threat if we get the virus. Those aspects of it are quite scary, really.

[gentle electronic music break]

CHRIS: We paid pretty close attention to the letters, you know, that there was this whole moment in which disabled folks in England were getting some notes about signing a DNR and things like that.

RUTH: The actual letter that came out was a clinic from Wales. It was a surgery in Wales. But they’ve been quick to retract it and apologize. But the government has started to put guidelines, and there are certain pathways through. There’s a diagram that explains the kind of pathway. If they don’t think you’re gonna survive, they’ll just look after you and give you palliative care. But it’s that quality of life for me. And one of the problems we’ve heard through Spain is there was a call out anyone who’s 65 or over automatically will not be given a ventilator if they need it. Because they got to that pressured time. Now, that could happen here as well. We are really in quite challenging times. So, we’re writing to people we can: our MPs and other bodies. I’ve just written to the Arts Council Chief Exec this morning from Wales to say about what we need to be aware of and what we need to do. ‘Cause there is a problem that the Arts Council may be told to cut all its funds to us from across England and Wales and Scotland if they feel the need to divert it to the National Health Service. Now, if that happens, it’s gonna be really difficult ’cause the mental health and well-being elements of what the arts do is just fantastic.

But this could be over in three months’ time. And then what are we gonna have? We’re not gonna have any kind of quality infrastructure at all. So, they’re big questions about life and death. But what I think is fantastic is that a lot of people who are sharing stuff about being stuck at home is how they’re reading books or watching movies or creating a new art experience or writing music or singing together. The art is what’s keeping us alive, [laughing] really and keeping us in a better space of well-being. And that just doesn’t seem to be appreciated how important the arts are. And we always give it a sort of second look. Yet at times like this, we can really show the way and keep people engaged. That’s so important ’cause the fear is a big one.

For us as disabled people with high-risk, it is a big one. ‘Cause I’ve asked myself the question. I discussed it with my husband about if I do get the virus, do I wanna go in an ambulance, which means I won’t see him again. If I die, I won’t have the chance to say goodbye to my family. I’ll die on my own, and I’ll just be taken in a coffin somewhere. And the whole thought of that is really scary. And I was actually thinking I’d rather stay home and let people come and Zoom in and talk to people and have someone to hold my hand if I do die. That side of it really is the scariest side of it for me. I don’t think I’ve got a good answer yet. [chuckles] No.

Cardiff is quite a high rate now. They’ve suddenly become the highest proportion of the community in Wales with this virus. Different countries have dealt with it differently. And one of the things that will be picked up once this is all over is how our government were really pushing the herd immunity approach. It was something like let it just run its course. That was almost like the conversation at the start, and there will be people who die. But, you know. But then they realized it was affecting more and more people. And so, they changed the herd immunity. You can only really get a herd immunity once the vaccination is in place. To actually do it this way, I thought it was another way of sanctioning social murder because it would be getting rid of all the old people and the disabled people and people with high risk. That’s the cynic in me.

But what’s happening for us now is that I have friends who have it. And one of my bestest friend’s daughter-in-law’s mom died at the weekend. She’s 51. Someone who spoke at our wedding, her auntie was in her hundreds, died in a care home of it. So, it’s getting closer to home now we’re actually knowing of people who are really impacted by it. A lot of people I know have had it and got through it. But I think a big wakeup call is the fact that our Prime Minister, Boris, has got it and ended up in hospital. That’s made people realize it’s not just the disabled and older people. Anyone can come down with this. And we just don’t know how the body’s gonna react.

CHRIS: What was the response, Ruth, that you got when you spoke back and sorta talked about that sanctioned killing?

RUTH: Well, that’s one of the things I’m finding really hard. I think people are not getting shocked by these things anymore, so we’re not getting the responses. I try sometimes to use language to get a provoking response, but it doesn’t always happen. There is still a lot around disability that the euthanasia conversation is still quite powerful here in the UK, Dignitas and things like this. And so, I think us as a community, disabled people, we really get it, and we really talk it and promote it. But something I try to do, I’ve got a reading book group I’ve been working with for 21 years. They’re wonderful women. And one of my favorite books that’s out you need to read is called Cull, c-u-l-l, by Tanvir Bush. And it’s about social murder policy really, that’s happened to disabled and homeless people by the government. It’s set in the future, obviously, but not that far in the future. And it’s very similar, the lines this, that if people are a problem, we find a way of removing them out the cheapest ’cause it is about economics, really. And that’s one of the things I think’s quite interesting about this whole dilemma, is that this capitalist society is broken down massively now. We actually can’t be capitalist societies because we can’t keep our GDPs up and things.

But the book, I said, “Let’s read it.” And I was quite shocked, though, eight women, “Aw, can’t read that book. No. Oh, no.” And there was a real anti-feel to it. Now, none of them are disabled people, so they have a different approach to me about these things. But I still think people wanna look the other way. And how we can get some strong messages out, will need to be a bit clever. I wish I was a bit more mouthy, and I could do it a bit better. But there are big issues, and I’m determined to try and find a way of airing them as I develop in my job particularly.

[gentle electronic music break]

JILL: You’re one person. You’re part of one organization. How do you mobilize maybe the younger generation or other people who haven’t thought about this? Because what you’re saying, it sounds like it’s gonna take a lot of people.

RUTH: Yeah, it is about politicizing people. But I think there’s hope in community and hope in identity and the whole approach around disability. Because I think the inclusion agenda is almost, because people don’t always have the lived experience of disability, it’s always seen as negative. Always seen in those tragic models. We know all this so well. And our dialogue is still not being heard enough. And some young people don’t want to expose as disabled. They don’t understand the political. And so, there’s fewer disability activists who are out there. We need to make a change. I’m trying to do it. And the way I’ve always worked is I’ve gone into these places to be at the table, to actually shake people. And I do it politically because you’ve gotta win people. If you’re there with a chip on your shoulder really going at them, they’re never gonna listen. So you have to be solution-based. So, I’m always trying to be solution-based: what we can do if we did this, if you talk like this. So, even though inside, I’m more angry than I have been, [chuckles] I’m trying to keep that diplomacy about the way I wanna approach these sort of issues. But I want to see other people doing it.

I have gotta live life now with this condition. It’s gonna be five years, and I’ve had it three years. So, I don’t know how long I’ve got left. So, I want to see other people take up the baton and do things. So, one of the big things I’m doing here with Disability Arts Cymru is setting up a young people’s work. So, we’re starting. We’ve just appointed someone to have that as their area of responsibility and trying to get young disabled people to be empowered through some of the politics around the Social Model of disability and proud to be Disabled and Deaf and just trying to get more artists who can be role models working with them, so it’s not always the therapy, we’re looking after you sort of projects, which tends to be the norm here. So, it is about sort of starting to find how we can help each other into those places of conversation, really.

JILL: You really created and developed the Young DaDaFest. And so, I’d love to hear, you know, you can go that route if you want. The other is the solutions focus. As we move out and people can go back out into their communities, and we have a new normal of what that may be and a transition, I’d love to hear what changes can we be thinking about today and transitioning into for the long-term? So, either or both.

RUTH: Well, Young DaDaFest has become the main focus of the work in DaDaFest now. ‘Cause I was off a lot with hospitals and recovery and things, and it moved into a very different direction. And the young people are very empowered there, particularly around music and performance and the intersectionality to actually get different people coming in. So, they’re just doing their own thing. And the way it was set up is they took charge of it. So, whatever they wanted to do, their voice was listened to. Which was hard for me at times ’cause I’d go, “Oh! You could do it best if you did that.” It’s like, no. I think us older people have to allow those voices through. And I do think the digital natives are actually gonna blow us out of the water with all the new ways of working with technology: wearables, and artificial intelligence and all that sort of thing. I think we’re gonna see something quite explosive happen with young people. I hope in Wales we can use the digital platforms, and I’m now connected with Cardiff University to be looking at developing a social media platform that will be more accessible than it’s ever been before to connect people and let young people take that charge. But it has to be artform specific, developing skills.

One of my favorite moments at the last DaDaFest is a young musician called Sarah Fisher. She’s one to look out for. She creates her own musical instruments. And one of them was at the back of the stage. It must’ve been 25 foot long, and it was huge, big sewer pipes, big yellow sewer pipes, at different lengths cut, just spread across, held together by a bar. And she taught musicians—’cause of their mobility impairment, she can’t always play the instruments—how to play it with the composition she made. And it was just an amazing sound. And it’s like that’s what I love about disabled artists. We come from a different place of creativity. And if we’re given a space to make the work in our way, it’s incredible what we can achieve. So, I think if we can really empower disabled young people, Deaf young people, we can see something quite exciting happening.

I think people like us are probably a bit passive. Some of our answers may not be relevant, but this new normal is a big one. It’s one of the questions I’ve put out to our artists. Well, they don’t know it yet, but it’ll be one of the themes in a couple of months’ time: What are we gonna be doing in the future? Do we all want to go into businesses around protective [laughs] clothing and masks? I mean, which is a nightmare for Deaf people. We can’t see anything. So, yeah, it was just quite interesting, but I think there will never be a new normal. I think our lives have changed.

I mean, it’s hard because we know in our Western culture background we’ve got so much in place. But when you actually start to think of some of the slummer areas and the favelas and the refugee camps, there’s no hospitals. There’s no treatment. That’s gonna scare me how people are really gonna be impacted by that. Because until we’ve gone through the whole planet with this and we know what we’re doing, I don’t know if we’re ever gonna be able to out what’s gonna happen. I think one of the good things is it’s connected us like we never had before as a human race. I’ve really fought against the rise of nationalism in our lands, really. I hate the fact that Britain has left Europe because it was stronger in Europe, from my opinion. But now we’ve shown we’re just one species on this planet who can’t help each other more. And it’s a really strange place for us to be. One of the things about nature is it’s almost like allowed to take over again. And we’re seeing butterflies and insects we haven’t seen for a while, and we’re seeing rivers clear. It’s almost the earth have been allowed to breathe. And I think the environmental issues are huge for us, and how we all adapt to a changed world with that will be an interesting thing. And we’re showing we don’t always need to fly around the world. That we can do Zooming. We can connect in different ways.

‘Cause I think there will be practical things. People will be afraid to say hello with a hug. I think the whole thing about masks: people will be wearing them for a long time because there’s fear in our culture now about what we’re gonna do. I’m not being very solution-based [chuckles] because I really don’t know how it’s gonna pan out. But I think having artists to feel equipped and empowered to work through this and think it through would be a really good way of looking at new scenarios of new worlds and new ways of working. We have got really big issues though, in terms of economic sanctions that’ve happened to different communities: disabled people, homeless people, older people. In America, we’re getting lots of stories about how most people who are being impacted by the virus are Black communities, which are traditionally the most poverty-stricken.

I pray that we can see a rebalance in that and that we can actually start o really challenge the capitalist hold that we’ve had, particularly with the more affluent countries. Yeah. It could be a chance for the world to totally change and come together in a new way. I was thinking the other day, me being a sci-fi fanatic, we could end up like Star Wars where we never have money. We just have a sorts of credit that we can swipe. And we have one currency, and we right the global debt. And we can all start again! [laughs] It may come to that. It would be interesting to see where we go. Yeah. Really, I haven’t thought that way yet, too hard. [chuckles]

[gentle electronic music break]

JILL: How about for the disabled community and their voice as part of solutions?

RUTH: I’m hoping we’ll capture some of that with the exhibition about how people are responding. This is our normal for a lot of us that we are indoors for lots of different reasons, fears, and whatever. And our voices could get stronger and give people more hope about the way life changes. It’s not the end of the world that we’re stuck in. It really isn’t, you know, particularly for those of us who have got running water, and we can order food online if we can do that. We are finding methods through it. One of the things that’s been brilliant about where Derek and I live is we’re in a gated community, which is no longer gated. The gates are wide open, which is fantastic! ‘Cause I didn’t like that anyway. That we’re all in flats or houses right on the bay in Cardiff, and we’ve set a WhatsApp group. And we’re all in contact with each other. Do you want bread? I’ve got spare bread. Anyone need this, anyone need that? And every night, we come together on our balconies or outside our doors and clap and cheer for the National Health Service at 7:00 every night. There’s hardly anyone doing it, but we don’t care. [laughs] ‘Cause you’re gonna still cheer for people. So, that sense of community is something we’ve never experienced until this happened. They weren’t very friendly before that. And they’re a very professional, transient community. A lot of people who work with the government office and things just come here for a short time. So, suddenly, seeing a change in how people are looking out for each other is very interesting. And I wonder, disabled people probably have more of a voice to be able to say, “Well, often, I have to work like that anyway,” and get our voices out there stronger.

I am dismayed, though, that there aren’t more disabled voices being used in our mainstream media. We are being very forgotten. There’s been a lot of talk around homeless people and releasing prisoners and things like this, but these issues around the do not resuscitate thing are not being really discussed. It was in Wales about the fact that it was a surgery in Wales that sent out this letter. It was sending it out to people who were living with cancer and things like this. So, not just people we traditionally think that they were a target. But it’s there in the background, so we’ve gotta be ready to challenge it. And we need to. I can’t give really strong answers on all of this because we’re living in a time of history which is unprecedented. It really is. And we’ve all got responsibilities to how we wanna approach it and deal with it and what we can say out there as well. I’m very, I’m so aware, leading the company of what I’m trying to do to make disabled and Deaf artists know you’re not alone. But it’s limited what we can do. But we’ll do what we can to keep each other alive through our sense of community and connection. And I think that’s one of the strongest things that’s coming out of this.

CHRIS: I think the voice issue with seeing the potential for a disabled voice to get louder and not seeing the avenues through which to do that, I think that’s been very frustrating here as well. You know, we are talked a lot about, but we’re not talked to. The hope that we have that we come out of this thing a little stronger and a little bit more connected, that hope is diminished every time I hear somebody on the news that’s not me talking about the disabled experience or talking about a wide variety of experiences that they don’t have connections with. And that’s been really disheartening.

RUTH: Yeah, I’d agree. I mean, one of the House of Lords Baronesses is a disabled woman, but she’s experienced before this happened, of being in hospital and having “do not resuscitate” put on her bed anyway. So, there are some instances of that happening, but not really being thought of in the grand scale of things. Especially when you actually think about the proportion of disabled people who are at risk who are still isolated. It’s a huge issue in Wales ’cause it’s traditionally a mining community. And the mines 30 years ago, there’s still some mines going. There’s still a lot of that kind of knock-on effect from lung treatments and things. So, there’s a lot of disability and poverty within Wales, which I think we’ve got to be so aware about. And I did get quite vocal about this whole do not resuscitate thing. And I put thread on my Facebook, and I passed on the paper that was coming out to show the doctor’s code of conduct over it. And I’ve had a friend who is a GP who’s gone, “I totally disagree. That would never happen because all doctors behave in appropriate manner to save life. And no one would ever do that sort of thing to save a person.” And I’m like, “Wow. I know that’s happening.” And it’s like it’s what you choose to believe. And so, people are still very mollycoddled about what they think really does happen to disabled people’s lives, you know. There’s almost a sense that people may not even believe our stories if we tell them these sorts of things are happening to us.

But what has been interesting here, I think it came out the same time, but Netflix put on Crip Camp. Did you see the film? It was fantastic to actually see that. And I know that the Obamas supported it, which is, can you imagine Trump every doing that? Sorry, I shouldn’t get political about Donald Trump. It has triggered a lot of conversation, but I just wish it had come at a time before the COVID-19 scare ’cause it was a conversation that needed to happen without this over-current. Yeah. I’m just wondering whether we need to be doing something a bit cleverer, creating a film online across the world about all our experiences.

When I was talking about different countries, I’ve got an artist I’ve met in Malawi, and she runs a youth development program. Her and her brother are both disabled wheelchair users who are just phenomenal at supporting young Disabled and Deaf people in their community. ‘Cause there’s no schooling for them. And  letter was begging, going, “We need soap. We’ve got nothing to clean our hands. We’ve got to be protected.” And it’s that basic, you know. We’re getting money across. We know how to do that. But there’s people in India, because of the way their system works, we can’t get money to India to help people with the same issues. So, it’s hard. But some of the things we’ve gotta do are very basic at the moment, and if we can do them, we need to help each other where we can.

CHRIS: Are you hearing from other of your contacts around the world? And what are you hearing from them?

RUTH: Well, I mean, this one was about soap, sanitation products, and things like this. I know when I’ve gone to places like that, I always take some basic things like this because they’re hard to come by. But to actually think that is a real issue, ’cause we’re being told to wash our hands. And if you haven’t got the right sort of stuff to do it, water won’t get rid of this virus. And that can stop the spread. And particularly with disabled young people who have more support needs, often their families are the only people who’ll do things for them. And they’re poverty-stricken anyway. So, Africa quite difficult. And Indonesia’s quite interesting that they are having a lot more government sanctions, and they’re giving out free masks and things like this, which we haven’t really got here. People in Australia, they’ve got more into lockdown. I don’t know how much the media is sort of supporting them.

But my friends in India, I think India’s become very strict. One of the stories I got from someone last week was that the whole family have a physical impairment, which means they need support workers to come in and help them with their food. But the police won’t let them in. They won’t let them out in the street, the care workers ’cause they don’t believe them. And they’re saying, well, their family members will help them. And they’re saying, but it’s family members who have got it. So, we call help each other. And this woman was a U.N. representative for India in disability rights. After five hours of phone calls with government, they managed to get a chief of police who started to let the staff through to help with them. But it’s horrible that it can only happen with people who are in the know who’ve got a bit of clout. It’s those people who haven’t got that clout or that place to go that it’s horrible. When you start to think about it, it breaks your heart, really, what’s going on.

I think one of the things about communication is we can keep people going, “Yes! Keep on. Carry on. Do it. Don’t give up. Keep talking. See if I can help.” Write a letter, an email or whatever we can, to support each other, to keep the support we need to keep our needs met and people to be aware of the different issues that we’re dealing with, with this virus as well.

JILL: As you’re talking, I’m thinking about the implicit bias, how important it is to be aware of ourselves like the GP, the general practitioner, of really being aware of their own biases and how they may play a role without being intentional. Have you seen that as well?

RUTH: Oh, definitely. You definitely do see that. That it is hard, but I think we’ve got to try and challenge. And people don’t always wanna be challenged. And I suppose one of the other things about this that can be a detrimental effect for disabled people is people will help you and give you what they think you need to be helped rather than really asking you what you need and then feeling good for it. So, if you say, “Well, actually, I didn’t need that,” they find you won’t defend them. [laughs] So, we’re having that sort of charity culture is emerging a lot more with some of the behaviors of people: that bias to help the needy. ‘Cause one of the things that I’m calling on my offices and other community workers that we know of is how we can really support people at their point of need and not make assumptions. And some of the things we need are really quite basic. So, just trying to get that conversation happening without pulling back. ‘Cause if you’re feeling you’re offending people all the time, you just stop speaking. And you’ve gotta keep your strength up to keep on doing it.

What was great about that GP is that the next thing that came out was this letter, this do not resuscitate letter. [chuckles] So, she could see evidence that it was really happening, but she hasn’t really responded. She’s gone very quiet, so.

JILL: Well, she probably believes in the good in people.

RUTH: Yeah. It’s lovely to be like that. I do have that approach, but you’ve gotta be realistic as well. And a lot of the things that we deal with as Disabled and Deaf people is people just don’t understand what we need. And sometimes it’s hard to articulate it, and it can be wholly hard in families who are actually very into pressing you and not really allowing you to have a voice to say what you need. ‘Cause one of the big issues is domestic violence. And the messages that are coming out here are around women being abused and things, but it can happen with anybody. There was one story I saw in the news a couple of weeks ago of a woman who has a child who’s got a condition, probably similar to muscular dystrophy. I don’t think it’s the same one. But she was just saying how she can’t cope. She’s pushing him in a big wheelchair, a three-wheel wheelchair and jogging down the road, and then just saying, “I am losing my mind over looking after him because I can’t get things.” And the kid’s sitting there, and she’s saying all these horrible things about her child right where we can hear. And the child’s about 12. And I just, that is so awful, you know that that’s what she thinks. So, what’s she gonna start doing to her child when the cameras aren’t there? If that’s the way she feels about him and how she can speak to him in that way. And that’s what’s not getting challenged.

And I also hate the fact over Boris—sorry, I’m really getting ranty now—Boris Johnson, this whole thing about, “He’s a battler! He’ll pull through!” Does that mean everyone who doesn’t pull through is not a battler and has just given up? The ableist language really gets to me. You know, this is unprecedented, and no one knows what’s gonna happen to people. And we can’t put the onus on the individual ’cause that’s where the blame goes, and we don’t take a collective responsibility for it. Yeah. Ooh. [laughs] Mm.

CHRIS: It is heavy. Yeah. You think about the ableist metaphors that we’ve all been fighting, and yeah, the fact that many of them are just getting stronger, you know? 

[gentle electronic music break]

CHRIS: Is your family OK?

RUTH: Yeah. I mean, they’re all in Liverpool, which is interesting.

CHRIS: Yeah.

RUTH: My mother is incredible. She, as January, got sepsis and was really ill. We thought, well, this is it. She’s gonna die. She’s now knocked down and really happy ’cause she’s got people who just come. In Liverpool, the library systems are working, mobile door library. She just sends a notice of what she wants, and they just put it through the door. And she just reads. She’s got people dropping her shopping off. So, she’s very happy. She’s not in a care home where there’s a lot of issues. Actually, there’s a lot of viral issues there. And my three children are all doing well. They’re all in lockdown. Thank goodness this is happening in this Information Age where we can Zoom in to people. We can email people. We can make sure we can keep connection. ‘Cause I’ve been doing that with all of them, and they’re doing OK. I mean, one of my children has massive depression issues, and they went down the rabbit hole quite badly three weeks ago, wouldn’t speak or do anything. And they’ve come back round and doing work online, which I find really interesting. One of my children’s a burlesque performer/dancer, so she’s been developing online classes telling people how to do burlesque and things like this. So, she’s keeping going with her students and whatever. My other child is a student in a studio flat with a cat, which is really difficult. But being someone on the autism spectrum, they’re actually quite happily social shielding [laughing] a very positive way! So, you know, some people are really enjoying [laughs] having this sort of exclusion at the moment. So, it’s interesting how we all have a different approach to it, really. Yeah.

I was thinking it would be great to try and do some online conferences or something with people around the world who are working in this field so we can just share and keep our morale up and hear our stories. I think one of the things is about making sure our story’s heard, that we’re not getting forgotten, and we don’t bury this. You know, the world has changed. We really don’t know what’s it’s gonna look like post-COVID-19. I do feel people, we are going to socially distance all the time from now on. You know, it’s gonna be very weird. What we have in our government is we can furlough staff, and so they can be laid off and get 80% of their wages paid by the government. Have you got nothing like that in place?

JILL: We don’t know exactly how that works, but we know people who are taking advantage of that.

RUTH: OK. OK. ‘Cause I know DaDaFest has decided to do that with their staff. So, their office is closed down, whereas we’re working more than we have done before because we all a membership organization. So, we have a lot of disabled people we have direct communication with. Whereas DaDaFest didn’t have that sort of length. The steering group of the young people met every two, three weeks or whatever. So, it’s a different dynamic I’m working with now, which gives me more space to do more with Disabled and Deaf artists. But I’m still working with the community to actually get people aware of some of the political positioning around disability ’cause it has been a very medical model scenario for a long time. So, I’m always catching up with what I’m used to doing with working with the Liverpool-based organization and other more disability political folks, organizations. But we’re moving in the right way, I think.

JILL: Well, it sounds like they’re fortunate to have you and your perspective that you can bring. The impact’s gonna be great.

RUTH: I’m looking forward to seeing how it all comes about. I mean, I have been talking with the galleries this morning, and everything’s on track. No one’s looking at pulling the project, I don’t think. Whereas a lot of arts projects have been pulled here. So, I’ll be interested if we can lead the way back into the new arts normality for disabled people and other people. ‘Cause obviously, we all wanna work to have an impact to everybody. It’s not just doing it for disabled people. It’s coming from that place.

JILL: What a powerful opportunity to continue to have conversations and have dialogue that is necessary as people are reflecting and reintegrating, you know, but have those choices. But then really get processing time through a project that’s really powerful.

RUTH: Yeah, I think so, yeah. ‘Cause we’ve got time to think, which is good. We’re not all on the go anymore. [gentle electronic music plays until the end of the interview] And I find it really interesting ’cause I’m focusing on work. I’m not using my phone and my Facebook as much as I used to. Which I think’s quite interesting. It’s like we need to just take a rest back and just be careful and just be aware of how precious life is.

JILL: Well, we thank you so much for your time!

RUTH: Hopefully one day, we’ll be together again in the same room.

JILL: Yes, yes.

CHRIS: Oh, we will. We will for sure. We will for sure.

JILL: Thanks for listening. Be well, keep your distance, send us your comments, questions, and your submissions for Oaklee Thiele to hello@DisArtNow.org. Please make sure to follow the My Dearest Friends project on Instagram, Facebook, and DisArtNow.org. And thanks again to the Ford Foundation for their support of this work and to cat enthusiast Cheryl Green for the transcription of this podcast episode.

Music: “Garden Music” by Kevin MacLeod. Link: https://incompetech.filmmusic.io/song/3796-garden-music. License: http://creativecommons.org/licenses/by/4.0/.