Miss Jacqui: disabled musicians who fight to perform

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Black and white photograph with a warm tone. The image shows the disabled musician Miss Jacqui seated in a wheelchair against a black curtain and lit by a spotlight. She is performing to an audience. She has been captured 'in action.

Miss Jacqui: disabled musicians who fight to perform

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, a disabled musician, 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.

Disabled musicians: restricted access to the music world

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.

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

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.


Photographic triptych, black and white with a warm tone. Each image shows the same disabled musician Miss Jacqui seated in a wheelchair against a black curtain and lit by a spotlight. She is performing to an audience. Her facial expression and gesticulation changes in each image
Caption:  "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.“ Miss Jacqui. Credit:  ©Owen De Visser/Sense 

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.

Disabled musicians: taking risks to keep performing

“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 musicians 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.

"Opportunities for disabled musicians are so limited that she keeps working even when she’s in hospital."

Black and white photograph with a warm tone. The image shows a disabled musician Miss Jacqui seated in a wheelchair against a black curtain and lit by a spotlight. She is performing to an audience which can be seen seated to her right int he background. She has been captured
Caption:  Miss Jacqui performing at the Sense Arts launch event for their inclusive arts plan, ‘Space to be Different’, June 2019.  Credit: ©Owen De Visser/Sense

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.


"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.'"

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 musicians, and how useful it is to share tips and experiences with someone who truly understands the barriers we face.

Photographic triptych, black and white with a warm tone. Each image shows the same disabled musician Miss Jacqui seated in a wheelchair against a black curtain and lit by a spotlight. She is performing to an audience and holds pieces of paper in her right hand. Her facial expression and gesticulation changes in each image.
Caption: Miss Jacqui performing at the Sense Arts launch event. Credit: ©Owen De Visser/Sense

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.

Frustrations and opportunities for disabled musicians

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 for 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.

“Miss Jacqui: disabled musicians who fight to perform” is republished from the Wellcome Collection under a Creative Commons Attribution 4.0 International (CC BY 4.0) licence. 

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Article by
Jamie Hale

Jamie Hale, the author of "Miss Jacqui: disabled musicians who fight to perform," is a poet, writer and researcher based in London. Their work explores the embodiment of queer, trans and disabled experience, the meaning of disability, and the reality of life with severe impairments and gender dysphoria.

Caption:

©Owen De Visser/Sense

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