Article

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Jamie Hale

Art, activism and access

The freedom to provoke

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Giving shape to sound

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Acting, disableism and inclusive theatre

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Talent, tech and visual art

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Disabled musicians and the fight to perform

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The politics and power of audio-description

story

The disability arts scene seems to be blossoming right now, and Jamie Hale is excited. As a disabled artist and activist, they want to investigate the interactions between disability and technology, access and art, and discover ways to make their own work more inclusive. In conversation with fellow artists, Jamie explores the places where accessibility and creativity collide, and asks whether technology should be used to cure and mitigate, or to truly break barriers.

Jamie is an artist, curator, and founder and artistic director of disability arts organisation CRIPtic Arts. They create poetry, comedy, scriptwriting and drama for page, stage and screen, and are currently directing a showcase at the Barbican Centre for autumn 2021 and a disability arts documentary. They have written for Wellcome Collection and the Guardian newspaper and have performed at venues including the Southbank Centre. Their poetry pamphlet, ‘Shield’, was published in January 2021.

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@jamierhale on Twitter

Author

Autistic and learning-disabled creatives are an essential part of the artistic world, but they are often underserved. Jamie Hale talks to performer and director Emma Selwyn about creating work that celebrates, rather than suppresses, autistic behaviours, and about the joy of acceptance.

Xandri stands on stage with three fellow autistic and learning-disabled artists. The four of them rattle charity buckets at the audience, competing to collect the most tokens. The show is ‘Not F**kin’ Sorry’, created by Not Your Circus Dog. Later, the performers strip to their underwear as a group, dancing joyfully. 

In their solo show, ‘My Hands and Feet are Wiggling’, Xandri paces, flaps and celebrates their autistic behaviours. Here, autism isn’t shameful or hidden – it’s central to their performance and the root of their power.

Xandri is the performance name used by Emma Selwyn, who also works as a director. They belong to Access All Areas, a theatre company for autistic and learning-disabled artists. I wanted to talk to Emma about the challenges facing autistic and learning-disabled performers and creatives, who are an essential part of the artistic world but are often underserved.

Finding Access All Areas changed, and possibly even saved Emma’s life. They tell me that they “wonder on and off whether I’d even be here if it wasn’t for Access All Areas”, highlighting the importance of spaces where people can find their peers. 

Emma had tried working at a bank and building what they call a “picket-fence life”, but this was leading them to a breakdown. Their decision to become an artist was motivated by misery and a desire for transformation. The art world was the first place they’d felt “the joy of reclaiming who I actually was because [before] I had had to behave in as normative a way as possible”. In Access All Areas, “my peers accepted me and my ’isms”.

“Finding Access All Areas changed, and possibly even saved Emma’s life.”

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Emma Selwyn in 'Not F**kin’ Sorry' presented by Not Your Circus Dog Collective and Access All Areas, 2019

Having acted for most of their life, mentored by neurodivergent director Liselle Terret, Emma started training at Access All Areas in 2016. After completing a Performance Making Diploma run through the Royal Central School of Speech and Drama, they applied for a role as a trainee co-director of Access All Areas’ Performance Company, working alongside artistic director Nick Llewellyn on several projects. 

Access All Areas works on what could be described as a model of co-production – not everyone working there is learning-disabled or autistic, but the company tries to ensure everything is led by people who are. They use a model of work that they built from the ground up to be adaptive and collaborative, instead of simply trying to apply the standard model to neurodivergent artists. This gives their artists the opportunity to decide to develop challenging, provocative work that might be controlled or deemed inappropriate by another arts organisation.

As Xandri, Emma is a master of challenging work. I’ve found with my own work that it’s important to push a non-disabled audience to engage with what I experience as a disabled person – but Xandri takes this to a new level. In ‘My Hands and Feet are Wiggling’ they select audience members and accuse them of “repetitive behaviours”. By doing this, Xandri challenges the audience to consider their complicity in medicalised discussions about neurodivergence, which discourage ‘stimming’ – repetitive movements or noises that bring someone joy or calmness. 

Before Xandri found disability arts, ‘stimming’ was a dirty word; here, it is welcome and forms the centre of their show. The show is based around a translation of a Korean song called ‘Sonbari ogulogul’ by K-hip-hop artist Tymee. Xandri explains that the title translates in multiple ways, literal and metaphorical. Literally, it means “my hands and feet are wiggling”, but it also encapsulates ideas of enforced shrinking or cringing (the English title for the song is ‘Shrinking’) – as well as the joy of sound and stimming. 

The song was written during a dark period in Tymee’s life. The show Xandri has built around it encapsulates their own joy at finding Access All Areas and at being able to celebrate their autistic behaviours as art, rather than having to suppress them. 

Autism is often described as an ‘invisible’ disability, but for Xandri, their experience is very visible. They explain that, for them, being disabled isn’t about having specific limitations, it’s about the way people treat them like “a circus dog from uncanny valley” – something I can closely relate to.

“To see an artist like Emma creating work that is beautiful because they’re disabled has been so refreshing.”

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As a director, Emma (the name they use for this part of their work) has faced significant barriers. They started their role just as the pandemic hit, and they’ve struggled with ‘cliques’ in the theatre world. The level of formality is disorientating for them, and they’ve found a “certain way of being as a director that you can’t let slip”. 

Part of that is Emma’s admirable approach to caring for their performers – they tell me that “the director has to be responsible for themselves and others, and others at the expense of themselves”, but another part is how other directors judge them. We talk about trying to follow the unwritten rules in theatre, and how much we’ve both struggled to understand them. It feels like a mysterious world.

To see an artist like Emma creating work that is beautiful because they’re disabled has been so refreshing, and feels like an ideal way to end this series. I’ve been able to speak to people who reflect multiple and varied facets of the disabled experience, and hopefully I’ve shone a light on some of the most important voices emerging today. 

It’s been a learning process for me – one that’s forced me to come to terms with my own impairment, and the power and importance of great d/Deaf and disabled artists. The arts world is slowly opening up to us, and the artists I’ve spoken to, young and old, regardless of genre, have reminded me that while each can only reflect their own experiences, there is an incredible variety of d/Deaf and disabled artists performing across a broad artistic spectrum. 

While everyone’s needs and position as a disabled person are different, we all face access barriers – and by breaking those down, we can all make art.

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Stephen Allwright

Photographer

Becoming Deaf didn’t change Signkid’s passion for music or his desire to perform. But he found the music world wasn’t always a welcoming place. Downbeat at first, Signkid swapped sadness for a determination to make the industry more accessible. He talks to Jamie Hale about inspiration, access, and how to create music for all audiences, D/deaf and hearing alike. You can watch a BSL translation, listen to an audio version and read this article below.

“There was a lot of missing information for me,” says hip-hop artist Kevin Walker, who’s also known as Signkid. 

“At the beginning of my journey, I felt depressed, I felt sad, I felt doom and gloom, but my passion made me persevere. I did feel that there were barriers, so I made a promise to myself that I would help the music industry become more accessible for people like myself globally.”

Signkid loved music from an early age. “I used to always watch television with my brother and, seeing Michael Jackson, I was in absolute awe of his performance, his musicality. It gave me such a happy feeling.” He emphasises that it’s a feeling he will “always remember”. 

After becoming Deaf when he was three years old, Signkid developed strategies for feeling the music better – standing next to the speakers or taking his shoes off so he could feel the vibrations through the floor.

Signkid says it was harder to be Deaf when he was younger. There was no subtitling and fewer interpreters. Even after the explosion of the internet in the 1990s, when he was 11, subtitles were often inaccurate and out of sync with the music. He watched the dancers instead, and planned to write his own music one day, for Deaf and hearing audiences alike.

It was rapper Tupac Shakur’s poetry book ‘The Rose That Grew From Concrete’ that really gave him the impetus to create that music. Here was someone else writing about protest and discrimination, something Signkid felt deeply as a Black, Deaf man. This book “lit my fire”, he says, but when he looked, there were no entry routes for Deaf people into music.

Signkid at work. He writes and produces his own lyrics, signs and music.

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Viewable Music

Signkid is a Deaf artist. “Big D Deaf” people are those whose primary language and communication is signed and who socialise within Deaf culture. People who are hard of hearing or have hearing loss, but who don’t communicate fluently or primarily in British Sign Language (BSL), or don’t use Deaf spaces, are known as “small D deaf”.  When referring to both groups, it’s common to write D/deaf.

Signkid’s music is unique in that it’s written for both D/deaf and hearing audiences. The heavy bass makes the music tactile and vibratory, while he often uses simple, clear, repetitive signs for the choruses – encouraging any audience to learn to sign along. Signkid writes the lyrics, the signs, and produces the music, while someone else often sings or raps.

Technology is key. The SUBPAC vest translates music into vibrations the wearer feels in different places on their body. It’s bulky but allows Signkid to feel his music in a multidimensional way, as he writes and mixes it. When that’s not available, he’ll use a heavy speaker he can feel, while standard industry software also often visualises the rhythm of music. Being Deaf is not an impediment to his making music – instead it adds an extra dimension, one that makes his work far richer.

We discuss inventions that would make life easier, and Signkid imagines a more wearable version of the Subpac – something sash-like that he could use on stage. At the moment he relies on the resonance of the sound through the floor, using his feet to follow the beat of the music. He always wears plastic shoes or flip-flops when performing and asks for big speakers so he can easily remain in time with the beat. 

He is still forced to rely on venues’ willingness to understand and meet his needs, an uncomfortable position I also find myself in as a performer.

Signkid has found the music industry isn’t always a welcoming place for D/deaf artists. He’s determined to change that.

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Kevin Walker, aka Signkid

Signkid has experienced a lot of exclusion from the music industry and says that there are still “barriers towards Deaf musicians and artists, with a lack of education and understanding. We get turned away because companies think it would cost too much to make reasonable adjustments for us.” 

He tells me, “We make great music, but the industry doesn’t appreciate it.” Many of the problems faced by Deaf people are a result of a lack of awareness, Signkid suggests, and this fits with my experience as a disabled artist. 

While the industry sees Deaf people as too expensive to employ, the education system makes BSL too expensive to learn – pushing Deaf people into a corner where there are very few people who speak their language. If he wants to attend a wedding or funeral for hearing friends or family, for example, Signkid has to pay for an interpreter to accompany him out of his own pocket.

Signkid talks about the visual learning styles children have, and how they retain information from rhythms. Signed languages are ideal for them to learn because they are rhythmic. Learning BSL “would only enhance a child’s language acquisition and expression […] I don’t know why it’s not incorporated in schools yet”. 

Given that there are an estimated nine million people who are d/Deaf or have hearing loss in the UK, and might thus benefit from BSL, it seems to be a huge waste that it isn’t taught in schools.

Signkid performs ‘Listen With Your Eyes’.

As well as being a musician and educator, Signkid is an independent researcher. Moving from Italy to London at 19, Signkid had to learn BSL on arrival, which is very different from Italian Sign Language. His experience in learning multiple signed languages has led to an interest in slang, the roots of a sign, and how it changes meaning in different contexts and communities.

The extent to which signed languages are complex systems often surprises people. He talks about discussing the context-dependent meaning of the sign “dope” – which can mean “cool” or “cannabis” – or both, depending on the country, context, and the age of the speakers. His older Caribbean family would recognise the latter meaning, whereas a younger British signer would be more likely to use it to mean “cool”.

It’s this fascination with words and language – signed and spoken – that makes his work so open and inviting. He talks about the variety of experience in the D/deaf community – people with and without hearing aids and cochlear implants, people who read written English and those who primarily use signed languages, people with varying degrees of hearing at varied frequencies – and he tries to make his work open and inviting for all of these people, plus hearing audiences. 

All of his performances are signed, the singers and rappers are subtitled, and he is live signing – moving and engaging with the audience. It’s this that gives his work such an edge – every time he gets a nervous audience signing along with the chorus of a piece, he’s opening more people up to the idea of learning BSL, and welcoming hearing people into this world.

Samuel Dore is a filmmaker, photographer and designer.

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Samuel Dore

bursteardrum.net

Filmmaker

Kirsten Irving is a Lincs-born, London-based voice artist and poet. She has voiced work for a range of organisations including the Fairtrade Foundation, Royal Botanical Gardens Kew and the Women’s Institute, and can be heard on the Mosaic Science podcast.

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Kirsten Irving

kirstenirvingvo.co.uk

@KofTheTriffids on Twitter

Voice artist

Thomas is a London-based photographer working for Wellcome. He thrives when collaborating on projects and visual stories. He hails from Italy via the North-east of England.  

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Thomas SG Farnetti

Thomas S G Farnetti

Drama school never seemed like an option for Jamie Hale until they found Graeae’s Ensemble. In conversation with the theatre company’s artistic director, Jenny Sealey, they discuss creating inclusive spaces, ticking boxes and whether non-disabled actors should ever play disabled parts.

“It was like an epiphany: the whole world made sense. I was allowed to be Deaf in a way I’d never been allowed to be before.” After finding D/deaf and disabled theatre 40 years ago, director Jenny Sealey now can’t imagine life outside of it.

Art coming from these communities has different principles, intentions and inclusiveness. It might be multilingual, with integrated audio-description, creative captions and British Sign Language woven into it. Rehearsals might have taken far longer, to allow actors time to rest. 

In my experience the complete process, from writing to directing, is far more collaborative than elsewhere in the theatre world. Disabled people know what it’s like to be excluded, so we attempt to ensure that our own practice is designed to be as accessible as possible to everyone.

Accessibility has been Jenny’s life’s work. And Graeae – the D/deaf and disabled theatre company founded in 1980 and which Jenny has directed since 1997 – has led the way on integrating D/deaf and disabled creative practitioners into the theatre world. Jenny describes her mission as being to make Graeae a “safe place for [D/deaf and disabled] artists who want to be actors, writers and directors”.

Performance of Belonging, presented by Graeae and Circo Crescer e Viver, 2014.

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Performance of Belonging, presented by Graeae and Circo Crescer e Viver, 2014

I am one of the beneficiaries of Jenny’s relentless drive to create opportunities for D/deaf and disabled actors. I’m part of Graeae’s Ensemble – a Certificate of Higher Education in Theatremaking and Leadership accredited by Rose Bruford and in conjunction with the drama schools RADA, Central School of Speech and Drama, and LAMDA. 

Drama school would never have seemed possible for me as a disabled artist, but here Graeae have created a type of drama education that works with us, rather than against us. It’s offered me training and support, and the experience I need to work in big theatres, whether as part of a D/deaf and disabled cast, or as the only disabled writer, actor or director.

The programme was set up in response to the lack of professional training for D/deaf and disabled theatremakers. Jenny has “been banging on the doors of drama schools for 24 years and there’s incremental change but not enough – there’s still that weird ethos that there aren’t enough parts written for disabled characters”. 

Jenny tells me that, in fact, more parts are being written: “The rise of Ramps on the Moon [which aims to normalise the presence of D/deaf and disabled people in theatre, both on and off stage] is an absolute indication that there are jobs for D/deaf and disabled actors; we’re worth the training.”

Belonging, 2014

Jenny and I discuss the assumption that disabled actors can only take parts written as disabled. This is especially bitter when many parts that are written as disabled are typically played by non-disabled actors. Mat Fraser, who has long been involved with Graeae, was the first disabled actor to play Richard III on a major stage – despite the fact that Richard III is written as a disabled character. Meanwhile, the non-disabled Eddie Redmayne played Stephen Hawking in the film ‘The Theory of Everything’. 

Other prominent non-disabled actors who have played disabled characters recently include James McAvoy in ‘Inside I’m Dancing’, Sally Hawkins in ‘The Shape of Water’, Javier Bardem in ‘The Sea Inside’ and Charlize Theron in ‘Mad Max Fury Road’.

“Acting is about being somebody else […] but did they try and audition any of us?” Jenny asks. “We’re not given the equality of opportunity to audition for those characters.” 

Even where major parts are given to non-disabled actors, it is important to cast disabled actors elsewhere in pieces. Given that disabled people represent 20 per cent of the population, Jenny insists that there’s no reason not to employ us in every production, as well as front of house and backstage. 

It’s “such a missed opportunity – what we bring to that character is an extra richness”, Jenny argues. But, without training, we’re not given the skills and experience for major parts, and without equality of access at audition, the opportunities out there even for excellent artists are sorely limited.

Performance of In Touch, an Inclusion Theatre Company and Theatre of Nations co-production in association with Graeae Theatre Company, National Theatre, Sense and The British Council, 2017.

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Performance of In Touch, an Inclusion Theatre Company and Theatre of Nations co-production in association with Graeae Theatre Company, National Theatre, Sense and The British Council, 2017

Jenny says that some theatres are programming D/deaf and disabled artists – for example the Barbican, the New Wolsey and Battersea Arts Centre. But she feels, in general, “It’s always the little ones that are more robustly putting their politics on the stage,” while the bigger theatres get the credit.

Given that disabled people represent 20 per cent of the population … there’s no reason not to employ us in every production.

Even where D/deaf and disabled people are brought into theatre to tick boxes, Jenny feels “that’s part of our resilience as D/deaf and disabled people, in the sense that you stomach the tick box and we’re savvy in how we use that tick box in how we try to make change”. She doesn’t want D/deaf and disabled artists “to just be flavour of the month; we want to be flavour all the time – it’s having that artistic space to just find out what story you want to tell and how you want to tell it”.

Where D/deaf and disabled artists are offered opportunities, it can be done in a patronising manner, and Jenny has no time for this. “I’ve seen enough bad work that got on stage because the non-disabled world is too frightened to challenge disabled artists, but we need challenging: we haven’t had the same opportunities and we need to learn and we need to take it on the chin when we get constructive criticism.” 

Jenny has “seen it with other disabled people, being applauded for getting up on stage, regardless of the quality of our art”, a position she sees as patronising. “We have to be good at what we do,” she says.

In Touch, 2017

We are both concerned about the future of D/deaf and disabled theatre as a result of the COVID-19 pandemic. A “survival of the fittest” mentality is a real risk, as some actors can return to work, while those who are extremely vulnerable to coronavirus are forced to stay at home. 

Jenny has ideas about how to ensure that this doesn’t happen with Graeae’s work: “We might have to explore plays with different mediums, live and non-live interaction. We don’t want to be in a position of only employing the fit people, which feels like censorship.”

Having transformed the face of theatre for D/deaf and disabled people during her work at Graeae, Jenny is keen to insist that theatre becomes even more welcoming to D/deaf and disabled people. “Graeae is not going away,” she says. “Our role becomes all the more important.”

Patrick is a specialist performing arts photographer and filmmaker working with a diverse range of clients, from the smallest theatre companies to the largest dance organisations.

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Patrick Baldwin

patrickbaldwin.com

@patrickbphoto on Instagram

Jenny Sealey directing during rehearsals for the production of Belonging, presented by Graeae and Circo Crescer e Viver, 2014

Jamie Hale has to continually modify their creative expression – as a poet and performer, writer and curator – to accommodate their physical impairment. In discussion with two disabled visual artists, they explore the crucial combination of talent and technology involved in making great art.

Keith Salmon, a landscape artist with a visual impairment, and Sarah Ezekiel, an artist creating work with her gaze alone, prove that our eyes can do so much more than look, and that great art can be created or interpreted with senses other than our eyes. 

As my own creative practice is limited by physical impairment, I am often modifying how I work and what I produce. I want to understand the barriers Keith and Sarah face, the technologies that are shaping their art, and how they keep working as their circumstances change.

For Keith Salmon, whose work is most often inspired by the mountains where he lives in Scotland, painting isn’t about capturing what a place looks like but how it feels. His work tries to “convey something of my experience of being in these places: the cold, the shimmery light, the wind”. Hillwalking is a central part of Keith’s creative process, and it gives him an “incredible amount of information and excitement”. He won the prestigious Jolomo Award for his landscape art in 2009.

Sarah Ezekiel’s background is pastels, watercolours and acrylics, but as her motor neurone disease (MND) progressed, she began creating art using a computer. After her career, plus “travel, marriage and babies”, and then the MND diagnosis, Sarah thought her dreams of being an artist were over. Instead, it was the opposite: “MND gave me a window of opportunity and being able to create again has made me more content,” she says. She’s the foremost eyegaze artist working in the UK right now.

Left: Keith making sound recordings near Kylesku, Sutherland. Right: Sarah with a billboard advertising a film – which was banned for being ‘disturbing’ – to promote awareness of MND. 

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Left, Keith making sound recordings near Kylesku, Sutherland © Keith Salmon. Right, Sarah with the billboard promoting her banned advert to promote awareness for MND. © Sarah Ezekiel

When Keith Salmon started out, “A lot of my work was based on man-made structures, then I came to Scotland and started walking so much that I decided to combine the two interests… I get so excited by wild places.”

Ten years into losing his sight, he went on a summer mountaineering course for blind and visually impaired people with the Mountaineering Council of Scotland (now known as Mountaineering Scotland). Keith says this “transformed and opened everything up, and it opened my art up as well”. Continuing hillwalking has kept him painting. 

When making dramatic changes to a painting he can only see part of, “The moment that I decide to mix the paint and get the big brush out and make that kind of move – that is really quite scary.” However, Keith is clear that this is “what creating paintings for me is about. It’s not about being safe. I think if you are too safe you don’t do your best stuff.”

Excerpt from the Kylesku Project. Painting 2: Mid-morning. Oil on canvas. 120cm x 120cm. Audio: KBS Audio Artwork. © Keith Salmon

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'Excerpt from the Kylesku Project. Painting 2. Mid morning', Oil on
canvas. Audio:  KBS Audio Artwork

Technology has changed the way Keith creates art. In 2016 he collaborated with Microsoft on the Oregon Project, using body sensors and soundscapes to make visual art more accessible to blind and visually impaired audiences. He was already working with sound in his own work, but this saw him using sensors to project location-sensitive sound at individual audience members so they could ‘hear’ variations in the paintings as they moved around them.

Keith continues to make recordings while out walking, and he works with sound engineers to turn these into soundtracks. He’s just finished a set of five paintings to be accompanied by a half-hour soundtrack, which, in an early iteration, “felt really good”.

As Keith’s sight loss progresses, the soundscapes enhance the visual image. He knows there are “successful totally blind painters out there”, but says, “I’m not sure it’s for me.” Instead he talks about enhancing his soundscapes as his art becomes increasingly minimalist, or “painting with words” using poetry, or writing descriptions of paintings onto canvases of the same size. 

“If I did become totally blind, as well as doing the audio stuff I could do written paintings and maybe the two will combine, because maybe what I wrote would be what I heard from the soundtracks,” Keith says. This would ensure that, if he goes completely blind, “I can still be a landscape artist.”

Excerpt from the Kylesku Project. Painting 4: Late afternoon. Oil on canvas. 120cm x 120cm. Audio: KBS Audio Artwork. © Keith Salmon.

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'Excerpt from the Kylesku Project. Painting 4. Late afternoon', Oil on
canvas. Audio:  KBS Audio Artwork

Sarah Ezekiel shares Keith’s love of the natural world. She tells me that “nature always inspires me with beautiful natural colours and shapes”. Her work has a fresh, clean air – there’s never any excess line or colour. The detail and positioning are modernist, with Sarah citing inspirations including Picasso, Hockney, Kandinsky and Modigliani. 

The eyegaze system Tobii Dynavox lets Sarah control her mouse by using her eyes, and therefore paint in programmes like ArtRage or Revelation Natural Art. I’ve tried out this software and found the process painstaking. It required me to look at a point on the screen to select a mouse, look at the brush to select that, and then activate a different mode to click and drag the brush across the screen. It clearly requires a lot of talent, effort and experience to use. 

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Seize the Day

Sarah currently uses a Grid Pad with a Tobii Dynavox eye tracker camera, but the eye tracker crashes constantly and she desperately needs to replace it with a better system. Eyegaze computers are expensive but essential for communication as well as making art. Sarah says she has been refused the £9,500 Tobii I-16 eyegaze system she needs and was offered an inappropriate one instead from the NHS. Tobii Dynavox estimates that its devices are provided to only about ten per cent of the people who need them.

In an interview for Creative Skills for Life, Sarah admits that creating art using eyegaze tools is a challenge, and that using her hands was much freer and quicker. Her paintings take several hours a day to complete over weeks or months, and the process leaves her eyes sore.

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Peaceful Warrior

Keith has also found that his pace of work has slowed. While Sarah feels that MND has ultimately given her space to be an artist, Keith says, “If I hadn’t lost my sight in 1990 I’d like to think I’d be a long way ahead of where I am now.”

It’s encouraging to talk to artists who have continued to produce incredible work even as their impairments have forced them to alter their creative process. Keith, too, finds it inspiring to meet “other creative people who are dealing with different issues and are still going out and being successful”. While disabled people aren’t inherently inspirational, it’s a reminder of how adaptable we really are – and how talent and hard work will always show.

Making it as a musician is notoriously tough, and it isn’t any easier if you’re a wheelchair user. Is the music industry doing enough to support the careers of disabled artists, when many venues remain inaccessible and the most innovative technology is priced out of reach? Jamie Hale talks to poet and songwriter Miss Jacqui about access, tech and acceptance.

The first time I heard Miss Jacqui’s music I started crying – I felt so seen. It’s rare to find someone who, like me, is both an artist and a full-time wheelchair user.

A poet and songwriter, Miss Jacqui “knows a lot about working with the cards that you are dealt. Especially because I am someone who always tries to challenge societal perceptions, like what it actually means to be a black woman with a disability.”

Miss Jacqui was part of the 2012 Paralympic Team Opening Ceremony, and she has performed at venues like the Southbank Centre and the Roundhouse in London. Her debut EP ‘Perceptions’ is currently on sale. She’s the obvious person to talk to about the music industry and the technology necessary to excel in it.

When I first came up with the idea of writing a series of articles about access and creativity, I was mostly thinking about D/deaf and disabled artists who use technology that I don’t – from audio-description headsets and cochlear implants to eye-gaze computer control and adapted instruments. I didn’t include the technology I rely on every day. 

Until I spoke to Miss Jacqui, I just hadn’t really considered the interaction between the art that disabled artists like us make, and things like wheelchairs, lifts and microphone set-ups.

While the acting world in which I move has made great strides in accessibility, Miss Jacqui feels that the same has not happened in the music world. Narrow doors, inaccessible stages and broken lifts have come to define and deny her access to performance spaces.  “The music industry is prehistoric sometimes,” she says.

Disabled performers continue to be excluded from countless venues, while the equipment we rely on is often poorly maintained.

"In June 2019 I performed at the Sense Arts launch event for their inclusive arts plan. Sense truly understands that the arts should be for everyone. The way they work and the venue just makes everything accessible.“

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Miss Jacqui performing at the Sense Arts launch event for their inclusive arts plan – Space To Be Different, June 2019

When Miss Jacqui performed at the Southbank Centre she was supported by an excellent venue that was willing to meet her needs. Sadly, she says, the same cannot be said of most music venues, where she is expected to forgo her need for lifts, her right to leave the building when she wants, and her safety in case of fire. 

Being carried into buildings by strangers “used to be a necessary option for me not to lose out on opportunities”, Miss Jacqui explains, but “now I refuse to put myself through that and if that means I lose an opportunity, then so be it”. It’s disheartening that these venues care so little about disabled musicians that even where they could adapt, they’ve chosen not to.

Venues actually have a legal duty to be accessible, and not just when we ask them to be. They are obliged to provide things like lifts and ramps. This “anticipatory duty to make reasonable adjustments” has been the law for 25 years, yet disabled performers continue to be excluded from countless venues, while the equipment we rely on is often poorly maintained.

“I sometimes feel like I have to work twice as hard to be normal, three times as hard to be exceptional, and I have no other options but to be exceptional as a black woman with a disability,” says Miss Jacqui.

Opportunities for disabled musicians are so limited that she keeps working even when she’s in hospital. Venues that can provide the technology she needs are so few and far between that discharging herself, to return to the ward the next day, feels less risky than giving up a rare chance to perform. 

Miss Jacqui also explains how little doctors seem to understand about the reality of the limitations disabled artists face. For example, she told her doctors prior to a medical procedure that her vocal cords were her career – only to come round to discover that they had been bruised, impacting her singing voice, which, she says, was a “really scary place to be”. This forced her to cancel studio and rehearsal time, and to lose income.

Miss Jacqui performing at the Sense Arts launch event for their inclusive arts plan, ‘Space to be Different’, June 2019.

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Talking with Miss Jacqui is a joy: I’m delighted to find another artist who is managing to juggle frequent hospital admissions with having a career. Much of the technology both of us would benefit from is out there, but without venues implementing it, and without connections being made between disabled artists, how will we find it?

Miss Jacqui points out how much the mobile phone has changed between the Nokia 3310 and the modern iPhone, and how little the electric wheelchair has changed by comparison. As we discuss its flaws, we both introduce each other to new ideas. 

Before Miss Jacqui suggests it, it had never occurred to me to request a jointed microphone stand that reaches over a wheelchair to correctly position the microphone; on the other hand, she didn’t know it was possible to charge her phone from her chair – but I know a device that does just that (the smart USB adaptor and charger from CareCo). 

Discussion about these things, and about the quietest ventilation mask available, reminds us of the specific tech needs of disabled artists, and how useful it is to share tips and experiences with someone who truly understands the barriers we face.

Talking with Miss Jacqui is a joy: I’m delighted to find another artist who is managing to juggle frequent hospital admissions with having a career.

Miss Jacqui performing at the Sense Arts launch event.

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Singer-songwriter Imogen Heap’s Mi.Mu gloves are designed to allow the wearer to control technology – like sequencers, for example – using gestures. Wearing them, you can connect hand and arm movements to music software, and perform or compose in a physical, intuitive fashion. 

Miss Jacqui used to play the piano but is now primarily a singer due to the progression of her impairment. She says, “The first time I saw a pair of Mi.Mu gloves, I was in absolute awe because it was the first time my mind could actually see myself playing instruments again without worrying.” 

But while they were made available free to a few disabled musicians, Mi.Mu gloves otherwise cost £2,500 per pair, which makes them inaccessible to most of us, Miss Jacqui included. Knowing that the tech is out there but out of reach feels isolating and frustrating.

Technology is wonderful – but only if it is affordable and it works. There are workarounds for broken instruments, but Miss Jacqui can’t perform without her wheelchair. When it broke last year, she was housebound for five days, waiting on a repair or replacement. As she explains, “My chair may not be a musical instrument, but I can’t give you an amazing show without it!”

For Miss Jacqui, these things are yet more unnecessary battles and obstacles. While Attitude is Everything is campaigning on access in the music industry, it seems that progress is slow. If venues would fulfil their obligation to be accessible, and if she could count on the tech she relies on to work, her career would move a little more smoothly. But Miss Jacqui’s music speaks for itself, and she continues to create opportunities for herself, and for other up-and-coming disabled performers.

What’s the point of audio-description at the theatre? In the first of a series of conversations with fellow performers from the disability arts scene, Jamie Hale explores the potential, power and politics of assistive technology for blind and visually impaired artists and audiences. 

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Art, activism and access

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Jamie Hale

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