Words that help or hinder
Chris Squire: Hello Mel. Well, there is a reality and there is a perception about disability and it would be great to have a conversation about that. From your experience, what could be changed? What would make things different?
Mel Stevens: From my own point of view, being a disabled performer, I find that the majority of barriers are put in front of me by my peers and the people who are supposed to be lifting my barriers.
One of the biggest problems is Access Needs. I’m always getting this, ‘What are your access needs?’ And my access needs are actually no different from anybody else’s. I like somewhere to be able to go to the toilet. I like somewhere to be able to put my keys and my personal possessions and I like somewhere where I can just break away, when I’m not publicly performing.
And everything else is very different, depending on how you live. So for example, somebody who is physically disabled, who spends the majority of their time at home, their access needs are going to be a lot greater but no different from anybody who spends the majority of their time at home, whether there’s a mental barrier, because you prefer your own environment or a physical barrier which means that you can’t access the world. Those needs are different. And those needs don’t actually apply so full force to what we do in outdoor arts.
Another concern is for audiences who have access needs. Again, these are very different and separate from those of a disabled performer. So as an audience member, I might need someone who could do BSL and explain what’s going on, if I can’t hear very well. And that can also be done very artistically. It might just be about having stewards who are there so that people with learning disabilities or autism for example, know exactly where to go if they need a suitable access view. It could be about be wheelchair access – having a designated area for wheelchair users to be.
And then you’ve got the performer’s point of view, which is: just let them find their own way. I work with blind aerialists. And when we produce a show, generally we just let them find their space for 1 or 2 days. They get to know the voices, who’s who, what’s going on. By day 3 they start to integrate. By day 4 they know where they are. And it tends to work very well.
With my own work, I’m somebody who uses crutches and I do a lot of ground based work and dancing and acro. When I learn a routine I have to spend at least a day sitting out and watching because my timing will always be different because I have to count 3 feet instead of the average dancer’s 2 feet. So I have to do this mathematical calculation. It may look like, ‘Oh she’s not paying attention, she’s just sitting there doodling.’ But I’m actually creating my rhythms, where I need to go and how it will feel kinaesthetically if I was to make this action.
It would be helpful for producers to be aware that if a disabled person applies for a job, it’s because they believe that they are capable of doing that job. We don’t go on experience. We go on potential because we realise that the role models for performers with disabilities are out there setting the bar. We haven’t finished it – it’s actually our generation who are doing it. And I think that it’s something that we should be celebrating.
Disability and performance
I think that important to realise that 5% of our population today, is living with physical disability. 7% of our population today is living with some sort of mental disability or psychological issue that’s affecting them. By representing at least one of those demographics within your production, you are more effectively representing society and you’re reaching out to people who otherwise wouldn’t have that platform.
When I first started my journey in circus and performing arts, it was with Graeae. I applied to be a disabled person coming to do some aerials for a production of Prometheus Awakes. For me, that meant sitting down and operating radio-controlled helicopters from my wheelchair. I had no idea that they would put me in a harness and stick me in the air! And I looked around and I saw 44 other people with visual impairments, hearing impairments, learning disabilities, some people with Down’s Syndrome. And I just thought – ‘Well if they can do it, then I can do it.’ And I think that my essence of circus and sharing is all about that. If I can do it, you can do it. And that’s how I try to connect with my audience. I think that everybody with disabilities wants that connection – to know that they’ve been seen, to know that they’ve been heard and to know that they can also do it.
I think a piece of advice for performers is that it’s accessible if you want it. A performer with a disability or a performer without a disability has the same spirit – they want to perform. A performer without a physical or emotional disability will still have a problem, whether it’s transport, whether it’s accommodation or not being supported in what they do.
A person with a disability will always have support. If they don’t have support, they will not be on your doorstep. They will not be applying for jobs. There is always somebody behind us, enabling us to do what we do. So, when it comes to access for people with physical disabilities and those types of diagnosed disabilities, we have our support, otherwise we wouldn’t be there. So, it’s a grey area that the able bodied world is giving us, that we could actually do without! Unless you think I really am a Disabled Performer and you’re just like, ‘Oh, what a good girl for having a go!’ In which case I take it all back…!
Also, sometimes the person that you hire to help you may be the person with the most experience but not the best potential. And I do really like to separate the two. I only work with potential now because what I do is quite unique. So whatever job my PA or support worker has to do is going to be unique from any other training that they’ve had. Because, no I don’t need you to come and rearrange my kitchen cupboards and clean my bathroom. I need you to help me organise my kit, get it in the car, make sure that my rigging is right – know what rigging is! Have I got a carabiner? I don’t need her having a fit that she doesn’t know what a carabiner is! But that’s where I need the help. So it’s about knowing that the person you’ve got is going to help you with what you want to enhance your life with.
There are schemes that exist which are helpful. There is a scheme called the Festival Republic. With most festivals a disabled person can get a carer’s pass for free. So we can take our friends with us everywhere. Most people will say to an able bodied friend who can assist with those sorts of things, ‘Do you want a free ticket to come to a festival?’ And the festival holder will provide that ticket, so it doesn’t come down to the arts companies to find those extra freebies. It could be a partner, it could be your mum, a friend, somebody who is interested in the same thing, who just can’t afford to spend their money but would love to go and would more than happily assist. These little things appear the more you want them.
Mel: Being treated like a child is very difficult.
Paschale Straiton: Does that happen a lot?
Mel: It does happen a lot, especially when I’m in my chair. That’s worse because people will talk over my head to whoever’s pushing it and I’m like, ‘I can speak!’ They just assume that you don’t know what’s going on in the world. Or your whole world revolves around disability. No – that’s why I do what I do so that it doesn’t revolve around disability!
Joanne Tremarco: I remember that stigma when I was growing up and my mum said, ‘Don’t stare.’
Now I live in Liverpool where DaDa Fest happens – the Disability and Deaf Arts Festival. What is fantastic about DaDa is that it’s not just about perception or disability. It’s about people who are trans, people who had cancer as a child and have had to carry that with them. There are Death Cafes there. And in a way that has helped to change the stigma around disability.
Mel: Yes. Of course you don’t want to be put on a pedestal because of it either. I trained at Circomedia. There was a piece we made where we had to move around the College Green outside the church. And they said, ‘Mel – I’m really sorry but you can’t use your sticks because as you move, the sticks go up and it’s a bit dangerous.’ So we did an acro piece where 2 able bodied flyers and me were literally flown around the green. Nobody could actually tell that I couldn’t walk because I was supported. And not being the only one was amazing. There were other people who could do really fancy tricks and I was like, ‘Yeah – I’m one of these!’ So it empowered me. I would have never been a flyer otherwise and it was like, ‘Oh my God, I did something that I never thought that I could or would.’ So celebrating with people rather than being the only one because…was really important.
It’s important to say, we’re all in this together. Ok we’ve all got this problem. We’ll all be blindfolded. We’ll all strap one arm. We’ll all find a way to make it work.
Chris: But it’s a very binary thing isn’t it? Either you’re able-bodied, or your disabled.
Mel: Or you’re a performer.
Chris: Yes of course the reality is very different but what I’m saying is, isn’t there a jump in perception from one to the other? People make assumptions about your capacities, in all directions because the term is a catch-all thing.
Mel: It’s a double-edged sword because though we’re not disabled when we’re doing our art, we’re very disabled when we’re applying for funding. It really depends which side you’re fighting for. I can’t pretend that it’s any other way because it is what it is. Maybe there would be things that wouldn’t happen if I didn’t have the situation that I live with. So, you can’t pretend it’s not there. But you can also celebrate the fact that it’s just a thing. You could also celebrate the fact that there are 3 married people within a cast or there’s a gay person in a cast or there are 4 people with cats and 6 people with dogs. You can find every reason to celebrate.
Garth Williams: Saying that you’re ‘living with’ something is very different in it’s use. But it’s flying in the face of the saturated media projection of a kind of alter-ego, that we should all be aspiring to, that isn’t where we’re at.
Mel: The media image is being fought over a lot more than it ever has been. Not just myself, but 3 other people got through to Britain’s Got Talent. After I’d got through they asked me to portray my day in a wheelchair, which I refused, because I only use a wheelchair if I’m carrying lots of shopping. And they didn’t like it. I think that any artist who is true to themselves would say the same thing.
Joined up thinking
Paschale: I was just thinking about The Miraculous Theatre Company, who were commissioned to adapt a show to quite a remote site. The producers are really forward thinking and it was important to them to help everyone to access all the shows happening that weekend. It was a walking performance and there was a bit where my character went into a clearing and it was going to be very hard for certain people to follow me. We’d been told to expect some wheelchair users, so we created a different but equally rich experience for people who would be limited to staying on the path. We thought about how it could be a special experience, without being patronising. But at the end of the festival we realised that we hadn’t had audience members in wheelchairs.
And then we actually looked properly at the site map, which had been distributed to the public. Our show was programmed as an ‘Accessible’ show but the route that you had to go on to get there was labelled ‘Difficult to access’. Which seemed a bit ridiculous. And while the producers were very conscientious, they hadn’t shared this information with us. Perhaps we could have done something about it.
Mel: It is about being really aware of what the site is. I did the Green Man Festival a couple of years ago. And everyone said, ‘Green Man? How are you going to do Green Man? It’s a bog!’ I just made sure I was ok, because that’s my duty, if I want to do it. As long as I know where I’m going, I will always sort out my own access. So I made sure that I had a portaloo by the area where I camped. I made sure that I could camp backstage from where my performance was happening. And the rest was kind of easy. And most disabled people will do that. It’s something that we do. We just check what we’re doing. If we’re travelling by train, we will check that there’s access to help us. We would never expect anyone else to do that. We wouldn’t trust anyone else to do that. It’s part of our routine. So yes, if a disabled person had known that site, they would have made sure that their access or support needs were met by the site, at no extra cost to the production, because that is a site responsibility. At Green Man they had trolleys, which would come and pick me up and if I wanted to get to the other side of the site they would taxi me there and wait and then take me back.
It’s also about giving that information extra early because someone who was blind would have wanted to have that map audibly described to them and learnt it, to have an idea of where they’re going. For example, you would turn left, you would go so far, you would pass a building or some sort of installation. To us that’s normal and it’s like, ‘Why wouldn’t you arrange that?’ But the good thing is that once you’ve worked with disabled people, you will learn all of these mechanisms that are in place that are automatic to us.
Disability and ageing
Joanne: I work with a woman who is in a wheelchair and she used to be an Olympic athlete. I work with her every week. She’s a visual artist now. And she has lost her confidence. I’ve known her for about 15 years. And in the last 7 or 8 years her confidence has gone. So she used to be fine with training, she used to drive everywhere on her own. Now she is in a wheelchair and can only move by dragging herself along. When she was younger, she was much fitter and could do that easily. So I think she wouldn’t have gone to that show. Even if she’d seen that map earlier she would not have said, ‘Ok it’s not actually accessible but I’ll work my way around it.’ 10 years ago she definitely would have done that. But now – no, it’s just too hard. So there’s a psychological thing that’s coming out with the physical disability and aging as well.
Mel: Sometimes we just start to want different things and we do step back and find another way to do it. I used to say, ‘I used to be a dancer’ and now I call myself a dancer again. But I had to step back. Your spirit will always remain the same. And being a competitive person it’s quite natural that she needs to find her way. Again, as I say, it’s normally other people putting those pressures and those barriers on you that can sometimes make us retract. But you know, share us with her. I’d more than happily be a friend and share what everyone else is doing in our network. It may be that she doesn’t realise there are lots of us, hundreds of us in the world doing what we do. She may feel that she’s alone.
Joanne: I think that’s it, she’s been trying to live for a long time and successfully, living a life as if she is able bodied.
Mel: Her mind is still able. Her mind will never be disabled. I have that same problem as I became disabled through injury but I still have an able bodied mind. Now I do lots of little things for people, realising that people do lots of things for me. And people say, ‘Oh you’re so helpful.’ Actually, picking up a bunch of bananas may seem really useful to you but I’m just trying to find ways to share that spirit.
Yes, let her know that there is a community out there. I’ve had people who have followed my Facebook page for 3 years and have only just started to make contact. And then shown me loads and loads of videos, some of which I’m interested in, some I’m not so interested in. But I know other people who might be, so you share, you connect and you signpost. So let her know that we exist.
Joanne: I know she finds it difficult because her community is not disabled or not in chairs. It was when she was a racer. She is very connected still, but it is just taking its toll actually. She just finds it exhausting, the actual hard work of it, over the years.
Paschale: Getting older is another kettle of fish isn’t it?
Joanne: Yes exactly. She could drag herself up hills and be happy for people to carry her up 3 flights of stairs to do something but now she just isn’t.
Mel: It might be that she actually needs to spend a few weeks going to hydrotherapy and having spa days and just relaxing and finding what she does enjoy. Those needs completely change but you need to be free to explore it.
And the mourning effect of disability and ageing is completely normal for everybody. I became a health and social care worker for 4 years. And I did nothing but think about why I would be better off not existing for 6 years. And that’s normal, because that’s disability. But I’m also the same person and have the same spirit and, in our own time, we always come back to living our own lives. I was never suicidal but that doesn’t mean that I was living. I was just existing and it gets tiring. I was just going through the motions. Well, everybody does, except for when you’ve got nothing in your life. You haven’t got to go to work. You see it more, you don’t have as many distractions…but you still come around.
Celebrating what we do rather than what we can’t do
Chris: It’s difficult when a performer has an injury or an illness and suddenly they are a disabled performer. What does that mean? There’s a whole spectrum of issues – some of them visible, some of them not, some of them physical, some of them not.
Sometimes we’re asked, ‘Is this show accessible?’ And you think ‘Well, for who?’ It’s in a caravan so you can’t really get a wheelchair in but we can help people in. The range of what disabled means and what accessible means, makes it so hard to say, ‘Yes it’s accessible.’ Some people don’t want to be in a small space. So that show’s not accessible for them. But someone with mobility issues may be able to enjoy it. So it’s not a simple thing is it? And the term ‘Disabled’ – I think that it’s awkward really. And then there’s ‘differently-abled’…
Mel: It’s not about disability, it’s about finding out what the abilities are. We’ve all got them! If you could hear my able-bodied next-door neighbour! She is the most disabled person you could ever meet. The way she screams at her children and her dogs, it’s like a circus just doing the school run. It’s a personal thing. I don’t see myself as disabled. I see myself as having things that aren’t as easy for me. But there are many things that are easy for me.
Chris: Is ‘Differently-abled’ useful?
Mel: I think that what I can do far outweighs what I can’t do. It’s about celebrating what I can do. I don’t focus on what I can’t do. I find as many ways to disguise it as I can, to escape and become a character. That is what performing is about, isn’t it? If people focus too much on aspects of your life that are private – what you hope to leave at the front door like the rest of the group – then it becomes messy.
All of us grow. None of us are doing exactly the same things we were doing 20 years ago, regardless of ability. Everything has to change.
Garth: Recently I found myself being drawn back into making work around mental health, which I was doing a while ago and it was big in my life.
I’m intrigued by how people go about making things like relaxed performances, which are a new vogue. How you take potentially very challenging and triggering material and make it into something that’s going to be shared with an audience who might be very sensitive or receptive to being triggered by the material. You start realising that there’s a whole kind of oversensitivity around the taboo.
Mel: Sometimes a taboo can actually give you some guidance. A bit like a game of football, it gives you those boundaries of knowing, that there are things that I can and can’t do but I can go right to that edge and still get my message across.
With a piece that I did at Circomedia. I was exploring whether I should tell people about my disability because people might think – ‘what’s wrong with her gammy leg? Why is she on sticks?’ Or whether I should withhold. People who are interested would find out who I was and would know a bit about me and those who weren’t interested would just think nothing, like people who aren’t interested, think nothing.
I’d written a poem and done this whole piece of work to go with it and I took it to Bim [Mason] and he said, ‘Yes, but it’s very attacking.’ And I said, ‘But this is how I feel. This is really everything that I feel and exactly how I see it and how my peers see it. And he said, ‘But it’s offensive.’ And I said, ‘How can it be offensive? I’m just saying how the world sees me and I’m trying to tell you that I’m just as capable of doing these things as other people.’ And he said ‘Loose the language. You have the skill to say all of this without all the language.’ And I was like, ‘How? It’s a poem!’ ‘Well, look at your modules – you’ve done mask, you’ve done clown, you’ve done puppetry, find something else. I don’t want to hear your voice.’ I was fuming, I was livid. I thought, ‘How am I going to present this piece with no voice?’ So, I took it to my friend in France and she said, ‘I don’t understand, it’s too much.’ And I was like, ‘Oh, if I just reduce the voice?’ ‘No, no no, use your face.’ She actually told me exactly the same thing but because it was coming from a friend it was easier to hear. We played with clown. I then took it back to Circomedia and I got a distinction. It was about the way it was put across and knowing the boundaries and playing within them. Every single word was still expressed in my face. I didn’t loose a piece of script and actually it was far better and it’s now an international piece.
Garth: More audiences will take it on if you’re less confrontational…
Mel: So how are you working with people with disabilities with your show?
Garth: I’m working with a company called Stepping Out, who are based in Bristol, who are a community membership group of Service Users – I hate the term –
Mel: But that’s brilliant, it’s a User-led organisation that can do what the hell it likes!
Garth: Exactly! I wanted to run workshops for people but not on the side, in a tick box kind of way, where I might open up cans of worms potentially and not be able to support that properly. So I wanted to work with an organisation, which could provide support.
Paschale: Travelling Light, the theatre company from Bristol have a strong engagement programme. I went to one of their sessions with a group of young people who have a wide range of disabilities or abilities let’s say. It was really beautifully facilitated and they had worked hard to get funding to ensure that it was free for everybody. That kind of provision is a rare thing to find – that’s free and that has happened consistently over a period of a few years. So there’s a young boy who’s profoundly autistic. Initially he could only be in the room for about 10 minutes before he became over-stimulated or confused and he couldn’t handle it and had to go back to the car or go home. But now after 3 years I think, he’s really engaging with people, he’s speaking in the sessions and it’s having a very dramatic effect on his physiology and his happiness. They understand that it’s about taking your time and letting someone respond and take responsibility for their own experience. We can trip ourselves up by wanting to get there too soon. Just be and see what happens.
Mel: What I do with people with different sorts of disabilities are spirit workshops. We’ll play different elements of music and we’ll make movement patterns responding to them. As the facilitator I’ll assess who’s got what skills, who can do what. They’re team building and having their separate conversations. Then, when you start to place them, they already know exactly where they’re going, without you feeling like you’re pushing. They will give you far more than you could ever imagine because you’ve allowed them to play and to find their spirit. I didn’t know half of what they could do until I let them play. I was like, ‘Oh my goodness you can do this? ‘Yes I’m blind, not stupid.’ This is where the healing comes. If the spirit’s healed, the gifts will just come. But a damaged spirit needs to heal and how better than through this type of work?
I’m always more than happy to share ideas. If you want workshop ideas that you could use, whether 15 minute long exercises or an hour long, I have tons!
Paschale: That’s good to know.
Mel: It’s also good to know how they worked out.
Paschale: I was in a show with the Desperate Men a few years ago. Richie Smith directed a mummer’s Nativity Play and one of the wise men was played a man called David Ellington who is deaf. He was partnered with his friend and colleague Freya McLuckie and I was really excited by what they were doing with BSL and their theatrical interpretation. I liked David and I wanted to be able to communicate with him and I picked up a few bits of BSL. But while he’s an excellent lip reader and can speak, it was difficult. After work, a bunch of us would go to the pub and there’d be some of his deaf mates there too. But after a whole day of working and lip reading, we’d be in the pub a short time before he’d say, ‘I’m sorry but I’m really knackered so I’m going to talk to my friends.’ And I realised that I couldn’t really access that community at all. They’ve got a shared background and understanding and I don’t have the faintest idea of what that is. This was a kind of invisible community inside mine. I was getting an inkling of that that means for the first time – disgracefully.
After that, NASA-UK invited him to be a part of the Outdoor Arts Lab about writing in Bristol as a Visual Vernacular performer, which uses BSL in a poetric way. I couldn’t actually make the workshop, which was led by David and another writer and BSL interpreter called Kyra Pollitt.
Chris: It was a fantastic session – it was really inspiring.
Paschale: He was up for it and then, just before the workshop he became really nervous. He hesitated as he wasn’t sure if it was entirely ethical for him to be sharing a deaf thing with a non-deaf or hearing-impaired community. And he was thinking, ‘Am I letting go of something that’s linked to my deaf identity? What are my compatriots going to think about that?’ But he did the workshop and he was comforted by the grace with which people respected his work. And he thought, ‘Phew I’m not going to be ripped off and everyone’s not going to be doing Visual Vernacular or take our stuff and re-appropriate it.’ There was a curiosity and a fascination and of course people were taking inspiration from him but he didn’t feel threatened.
It put it in relief how much somebody from a particular type of community or with a particular type of experience of the world can make assumptions about people who are different from them. Whether they’re from the minority or the majority.
Mel: I think that this is the first generation to actually stand up and stand out. So it’s absolutely terrifying for everybody with a disability to step up and say, ‘I have the potential to do this.’
Paschale: I thought, ‘David’s going to be up for it because we’re all sharing. Perhaps some of his community, his friends, his fellow artists – they might want to come along as well.’ But just because you’ve opened up an opportunity, it doesn’t mean that people are going to take it. I know that obvious but you have to develop relationships and that’s not as easy as it seems.
Mel: It takes a while to happen. The only reason that I know that I can have BSL in all of my shows is because one of my trapeze students is deaf. She’s more than happy to see all of the shows because nothing’s better than having a performance teacher who performers. Really it’s just me sharing what I do with my community and giving others a chance to realise, ‘Oh I can do more than wait for my mum to take me to my class.’ And that’s where the real magic happens. These people have no idea that I’m really going to make performers out of all of them. But they’re loving the journey and the discovery and the growth. And now they think, ‘Yeah, I’d like to perform now.’ It’s organic but you’ve got to let it happen, just by enabling it.
Let the visually impaired person sit out and just sort of wander around aimlessly (as it might appear to able-bodied people.) That person’s actually figuring out where they are and what’s going on. Let the deaf person touch things a lot and look into a glass of water to watch the vibrations and read the energy in the room. Don’t move the glass of water out of the way because sometimes that glass of water is there to show that the tempo’s changed. We don’t realise it because we don’t look at waves on water but a lot of people with hearing impairments do.
You learn these things. The more you live with an open attitude, the more you allow disability to be around you, the more you learn. We’re not intimidated when we see a black man with dreadlocks walk down our local street, whereas if you go back 40 years, the whole street would be curtain twitching. It’s about allowing yourself to see disability and then it will be accepted. But if we don’t accept it, no-one’s going to see it.
Joanne: The deaf community don’t class themselves as disabled do they?
Mel: No, because they don’t have a physical disability.
Paschale: And it’s a positive culture.
Mel: It’s celebrated. That’s what we’re missing. We’re missing the celebration in what’s going on. As artists, it’s important to keep celebrating what everyone’s doing because that’s what’s going to keep these conversations ignited and allow them to eventually take flame. It might take a year, it might take 10 years. You get many embers going, you get a far bigger fire. It doesn’t matter how long it takes, just stay open to it.