Disabling barriers to creativity
Huge advances in electronic aids available to disabled people have enabled budding performers to pursue their artistic dreams
THE INDOMITABILITY of the human spirit is such that the desire to create art can be successfully achieved among people with disability. An extreme example is that of Jean-Dominique Bauby, the late French journalist, who suffered locked-in syndrome following a massive stroke at the age of 43. Paralysed and speechless, he could only blink his left eye-lid. Despite his condition, he wrote the book, The Diving Bell and the Butterfly, which was made into an award-winning film in 1997.
Bauby achieved his feat by using partner-assisted scanning whereby he blinked when the correct letter was reached by his interlocutor who slowly recited the alphabet over and over again. Bauby dictated the book one letter at a time.
For artists with less profound disabilities, technology can be liberating. Deaf-blind pianist Orla O’Sullivan recently released her debut album, Sound Senses, on which she plays the music of Bach, Haydn, Schubert and Chopin among others. O’Sullivan’s hearing is low in the high frequency but normal across the lower and middle frequency. Her central vision is damaged but her peripheral vision is perfect.
“As a young child, my mother used to teach me nursery rhymes,” says O’Sullivan. “This helped my speech enormously as my hearing was so low.” O’Sullivan’s mother used to hold her fingers on piano keys. “I remember being able to ‘feel’ the different sounds through the vibrations. This was the beginning of my experience of sounds. I was able to identify the various levels of pitch, tone and sound. It helped me to release my frustration of not being able to communicate orally.”
O’Sullivan says there wasn’t much help for people with hearing and sight disabilities when she was growing up. “Fortunately, this has improved with more ISL [Irish Sign Language] interpreters, low-vision aids such as Zoom Text on computers, touch screens, iPhones and digital hearing aids.”
O’Sullivan has applied to the National Council for the Blind for a grant for a Readit Scholar. “This will enlarge up to three staves large enough for me to read without leaning forward and allowing me to play at the same time.” Ultimately, O’Sullivan would like to compose music.
Severe joint inflammation prevents writer William Wall from typing for any great lengths of time. The 55-year-old author, who was long-listed for the Man Booker Prize in 2005 for This is the Country, contracted Still’s disease – a form of rheumatoid arthritis – when he was 12. He recently started using MacSpeech Dictate, a software programme that converts speech to text on his laptop. It involves wearing a headset with an ear piece and a microphone.
Hospitalised for six months and holed up at home for a year after he was diagnosed, Wall began to write stories and poems. He was about 13 when he was first published in a magazine. Currently working on “something”, Wall has published four novels, a collection of short stories, two collections of poetry and nine children’s books.
“I work for a couple of hours at a time with MacSpeech Dictate and then I edit by hand afterwards. The editing is a pain although writing is labour intensive anyway. I can see the software learning from my speech as it goes along. Each time I go to the trouble of correcting the software, it learns the correction. It’s an adaptable piece of software that I ultimately feel is usable.”
However, Wall says the software changes the way he expresses himself, converting speech into standard English in a way that is more formal than his normal use of language.
“I can easily imagine a contest between me and the software as to whose style wins. The software will write anything I say, but it prefers words it recognises from its own dictionary. It will write a standard grammatical sentence more accurately than a non-standard one. It expects me to speak grammatically and it parses the grammar and the vocabulary as I go along – which I think is amazing. It’s a kind of artificial intelligence. I feel I can adapt it eventually to my own style.”
Over the years, Wall has had periods when he had to stop writing because of his health. “I was a two-finger typist. I couldn’t get out of the habit of hammering the keys. That has probably done damage. If I was a touch typist, I probably wouldn’t have done so much damage.”
Bobby Byrne is a dancer with Counterbalance Integrated Dance Company in Dublin. He has phocomelia, a generic term for foreshortening of the limbs. His right arm terminates at the elbow. Below that is a hand with just two fingers that are without knuckles. Byrne, now 33, came to dance late – at the age of 20.
“I had a very poor relationship with my body,” says Byrne. “As well as a short arm, I was small and sickly. But taking up martial arts put me back in touch with my body. I later took up fencing. I accidentally wandered into a dance class in Dublin and loved it, particularly the way it engaged the brain and the body at the same time.”
Byrne points out that there is “a fairly strong assumption of symmetry in a dance class. But I don’t have a symmetrical body. In a performance, it’s important for me to find a way of doing a movement so that it looks like the movement other people are doing.”
Byrne’s favourite technology sees off-stage operators take on the role of performer through the live manipulation of digital “sprites” in a theatrical environment. The sprites are projected onto gauze in the stage space and operators control them with graphic tablets and pens to perform with on-stage dancers. Byrne says the sprites allow dancers to make very small movements which can be translated into very large movements on the stage. “The amount of movement required to control the sprites is not very great. You just need a finger and hand movement.”
Ultimately, Byrne would like to design prosthetics that “are not designed to correct my disability but to play with the capabilities of it”.
DISABLED ARTISTS ON THE WEB
adf.ieArts and Disability Forum. This site’s featured artist section illustrates the quality work produced by disabled artists living in Ireland.
pwdi.iePeople with Disabilities in Ireland. Many of this site’s web pages use graphics from Irish disabled artists.
ndaf.orgNational Disability Arts Forum. Based in Newcastle, England, this forum is a mine of up-to-date information on disability arts.
igodap.orgInternational Guild of Disabled Artists and Performers. This organisation is based in New Zealand and has worldwide membership.
bbc.co.uk/ouchBBC disability website. This site takes a sideways look at disability issues.
vsarts.orgThe International Organisation on Arts and Disability. This promotes inclusion of disabled people in the arts.
A meeting in Dublin this Friday, September 24th, will highlight technologies that can enhance independence for individuals with physical disabilities.
The event will discuss technologies such as smartphones and will consider the specific situations of individuals who will be present.
The day-long meeting takes place at the D4 Berkeley Hotel in Ballsbridge, Dublin 4. For more information, see try-it.ie