Beating the drum for deafblind people

Janet Brown has been deafblind since she was 21 but has still amassed over 40 qualifications. With National Deafblind Awareness week getting under way on 27 June, she spoke to Natasha Periyan

This Friday children across the region will be banging drums in support of National Deafblind Awareness Week. The Drumathon is taking place in schools across the UK and is organised by Sense, a national deafblind charity that offers support to deafblind people and campaigns to ensure they have full and active lives in society. The event will allow hearing and seeing children to experience what it’s like to be deafblind with the vibrations from the drums recreating an important sensory guide for those who are deafblind: touch.

Schools across the north will participate, all with their own reasons for joining in. Etchells Primary School in Heald Green, Stockport, has been fundraising for Sense for years as a longstanding member of staff, Diane Griffiths, has a deafblind son, 20-year-old Dan. “Diane says that as a parent Sense is an invaluable support network and Dan has been part of the school community for many years,” says Janine Lambert, the school’s personal, social, health and education and citizenship co-ordinator. The entire school will participate. “The whole school will have a non-uniform day and the little children will make drums whilst the older ones will dress up as drummers, continues Lambert.

Roy Cummings, a teaching assistant at Lyndhurst School in Oldham, is also a drummer in a band called Straightlaces and holds weekly drumming sessions with children at the school. “I’ll bring my drum kit in for the Drumathon and play along with the children’s rhythm,” says Cummings. “We have a few kids with hearing and visual impairments so the whole sensory thing is very relevant to children at the school.”

The number of deafblind people is set to rise by 60 per cent over the next 20 years

Sandra Osborne, Sense director, emphasises the particular needs of the deafblind. “Being deafblind is very different to being deaf or blind as the combination of both sight and hearing loss is very different to a single sensory loss.” In 2001, the government issued statutory guidance for local authorities that underlined the need to provide particular provision for those with dual sensory impairment, rather than merely relying on services already in place for deaf or blind people.

Raising awareness of deafblindness has never been so important. A recent report by the Centre for Disability Research finds that the number of deafblind people in the UK is set to rise by 60 per cent over the next 20 years. Dual sensory impairment can be caused by genetic conditions such as CHARGE and Usher Syndrome, which sees those who are born profoundly deaf gradually lose their sight over many years. But much of the rise will stem from old age. Sixty-two per cent of the current deafblind population is over 70 years old – 220,000 of the current 356,000 deafblind population of the UK. As our elderly population increases, so too will deafblindness.

Percussionists Dame Evelyn Glennie is helping out with Drumathon this year

Osborne cautions against this as an excuse for inaction. “Visual and hearing impairment is dismissed as ‘part of getting old’. But often, people experience their vision and hearing reduced to such an extent that it severely limits their ability to do the things that most people take for granted like communicate, access information and get out and about.”

This social isolation experienced by people with deafblindness is something that Sense believes has to be legislated for, continues Osborne. “A civilised society should never cut from those who need it most. We want this government and all local authorities to ensure that as well as personal care they also provide for the social care needs of deafblind people – like basic communication needs and the right to get out and about and leave their home.”

Janet Brown, aged 46, from Stretford, is an example of the full and active life that a deafblind person can lead. I meet her with her Sense communicator guide, Sarah Gillis, who acts as an interpreter between the two of us, translating my questions into hands-on sign language and vice versa.

Brown was born profoundly deaf and her sight gradually deteriorated through Usher. By the time she was 21 she was deafblind. Despite this, Brown is able to live an independent life with Gillis’s support. She lives alone in her flat, visiting her mum at the weekends. With her food and spices brailled, Janet is able to cook Indian and Chinese food for herself.

Brown’s desire to take on new challenges is unstoppable

Hugely motivated, with a keen appetite for learning, Brown has achieved over 40 qualifications in areas as diverse as woodwork, deaf awareness, maths, massage and aromatherapy. She is now doing an ICT course at Fielden College in West Didsbury.

Brown’s desire to take on new challenges is unstoppable. “I will do more courses in the future. It’s important for me to go to college and do different things to keep my mind active, to focus, to achieve,” she says. A particular ambition is a reflexology course at Stockport College “But I have to improve my English first.” The challenges of this are clear: learning a language she has never even heard before is tough.

Gillis started working with Brown in 2009 and spends four days a week with her, going to the gym, swimming, shopping, having manicures and going to sign choir, in which performers use a mix of vocals and sign language. The pair are close friends and spend much social time together too, exchanging up to 30 texts a day at weekends. Brown reads her texts through a BrailleNote computer, which converts English into Braille.

Dave Rowntree of Blur, Emilie and Steve White at last year's Sense Drumathon

“We have a lot of fun and share the same wicked sense of humour. I laugh and joke with her,” says Gillis. “It’s important to break into her world of isolation and bring her into our world,” says Gillis. “I enjoy working with Janet. She is such an amazing person and an inspiration to me.”

The success of percussionist Dame Evelyn Glennie, is a testament to values of inclusion and integration. Glennie became profoundly deaf as a child but received a fully mainstream education.

The doors of the concert hall should be open to all

She says: “My comprehensive school was the first integrated and inclusive school in that region. The headmaster believed every child in the school should be given the opportunity to be involved in drama, music and art. A real openness of thinking spread to the staff and pupils. I believe very strongly in the importance and the power of participation. Music should be accessible. The doors of the concert hall should be open to all to come in and participate”.

Glennie is involved in the launch of the 2011 Drumathon along with Blur’s Dave Rowntree, the cast of STOMP and Britain’s Got Talent finalist Kieran Gaffney on 29 June in London. The experts will lead a drumming workshop for deafblind children in the presence of the Princess Royal. Glennie believes that the possibilities of percussion make it especially suitable for deafblind children, allowing them to get involved and experience music. “I’m in a fortunate position – as a percussion player my instruments are adaptable to people with different challenges and different backgrounds,” she says.

Glennie plans to bring a variety of instruments so that the children will experience different frequencies and vibrations. One of the more unusual instruments is a Halo, a steel handpan with a rich timbre and resonant sound. “It’s very tactile and very beautiful. You have to take your time with it,” says Glennie.

This is Glennie’s first year helping at the Drumathon, and she anticipates that the children will have a very different, more considered approach to the instruments compared with hearing and seeing children. “The young folk at the Drumathon will emphasise the tactile aspect of the instruments and take their time to get their bearings with the instrument. It will become like their limb. I really want to bring things that allow the sound to circulate around their body.”

Few will get the opportunity to drum with Dame Evelyn Glennie but more than 200 schools nationwide will participate in the Sense Drumathon this Friday. Brown is clear about the significance of such events. “It’s important that children understand deafblindness.”

Helen Keller

Deafblind week begins on 27 June, the date of Helen Keller’s birthday. Born in 1880, in Tuscumbia, Alabama, Helen lost her sight and hearing when she was 19 months old after a mysterious illness. Under the guidance of her teacher Anne Sullivan, who was herself blind, Keller learnt English through spelling letters on her palm, going on to become the first deafblind person to gain a BA degree. She toured the world, giving lectures with Sullivan’s help and continued her work after her teacher and companion’s death. She published a number of pamphlets during her lifetime, including Teacher, about Sullivan. Keller died peacefully in 1968.

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