UP CLOSE with Dom's Fund trustee Eleanor Barker: The origins, objectives and achievements of peninsula charity supporting stammerers

  Posted: 22.02.21 at 10:22 by Derek Davis

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Nub News gets UP CLOSE with Eleanor Barker, a trustee at the peninsula-based charity the Dominic Barker Trust.

For many of us the likes of Zoom, Teams, Skype and FaceTime are a way of life, for work, social and family time, which we all enjoy or endure in our own way.

Imagine then trying to communicate through these mediums if you struggle with dysfluency, better known as stammering or stuttering. What is already a difficult condition can be exacerbated by not having those non-verbal signals to help in conducting conversation, or making a speech.

It is an area that Holbrook-based charity, the Dominic Barker Trust, recognises needs to be researched more fully and its Trustees have identified as another potential project to be funded.

Moving into its 23rd year Dom's Fund, as the Trust is more informally known, has already donated more than £1million into raising awareness about the difficulties stammered suffer and funding research projects to help wider understanding of the issues.

A host of eminent academics, researchers, speech and language therapists at universities in Cambridge, London, Newcastle, South Africa and Suffolk have all benefited from the funds raised by the Trust and its volunteers, which was started in the wake of a tragic loss of life.

Dominic Barker

Eleanor Barker, describes Dominic as an intelligent, clever, witty young man much loved by family and friends, with seemingly much to live for.

But in 1994 he took his own life aged 26, with frustration at not being able to secure suitable employment due to his stammer, cited as a major factor. Despite earning two degrees at university, including a masters, but Dominic suffered constant setbacks.

One of the issues felt keenly by Dom was the attitude of potential employers during job interviews. In a letter to his family he wrote ‘Every employer sees it as a problem. It’s galling to find that your ability is not in question but that the stammer is’.

"It was totally unexpected," Eleanor recalled: "He was an outgoing, funny and friendly person with a lot of friends and was well liked.

"We had a lovely childhood on the peninsula, swimming in the creek, sailing, playing tennis, all the things you do here.

Avin Miraweldi putting research into practice

"Dom had got two degrees but we were in middle of recession and he was being told he could have job if he could get rid of his stammer and for a stammerer to hear that was very difficult. It is not something he could easily control.

"While some people are lucky enough to be able to control their stammer it is not the case for everyone, especially in times of anxiety, or if someone is going through a bad patch in their life the stammer can become pronounced."

Although going through their grief the Barker family decided to do something positive and started the Trust.

Eleanor said: "It was devastating, but at the same time we wanted to do everything we can to make sure other people do not go through the same thing.

"In particular we wanted to ensure stammerers and their families got all the support they need. Also, it was to break down the stigma surrounding it because back then the stigma surrounding stammering because it was much less understood than it is now.

"Part of the work we are doing is to help develop the evidence base for the cause of stammering is so we can therefore can find what the therapies or remedial aspects could be.

"We very much wanted to raise the positive aspects of people who stammer because it has nothing to do with intelligence. It is a difficulty in communicating through speech, which is an important part of or life.

"I can imagine right now how difficult using things such as Zoom or the telephone, can be quite difficult for people who stammer. It has become such a massive way we work and in our lives and social aspects too."

An aspiration has always been to use technology to benefit stammers, of all ages and the Trust

"Technology is going to be big factor, look at ways of funding that," said Eleanor. "Managing anxiety is important for all of us. It can be difficult thing communicating on Zoom face to face because you don't see the non-verbal signals, so research in that is something to look at."

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By keeping overheads to an absolute minimum, the Trust has no administration costs apart from a website. No offices, no leased cars or other costly outgoings often associated with charities.

Their funding has had tangible results over the 23 years working closely with STAMMA (formerly the British Stammering Association and has resulted in the development of a play pack for children who stammer to be able to use at home before they get into speech and language therapy.

It is estimated 5% of children stammer or have dysfluent speech at some point not easy to identify which will become stammer or just fall over worlds, so their funding has helped the development of screening tools and support speech and language therapists and training sessions workshops

Eleanor said: "We found there was no-one doing academic research so we felt we could contribute in a positive way.

"It was always important that the research had a practical outcome and it was not just a lovely ivory towered academic research that just sat on a shelf.

University of Suffolk is one of many research projects using donations from Dom's Fund

"That includes research on speech and language therapy practice, which was one of the early pieces of work at UEA, that has been taken on board by the Royal College of Speech and Language practitioners, so it has had an outcome on policy.

"We have achieved a lot but there is more to be done."

Various offshoots of research done at Newcastle University, University of East Anglian, University of Suffolk, University College London and University of Witwatersrand in South Africa have made widespread contributions.

St Thomas' Hospital in London is spearheading research for the NHS employees, while the Employers Stammer Network continues raising awareness in the workplace, along with the Civil Service and a number of blue chip companies, funded by the Trust.

Eleanor added: "For a relatively small charity we have tried to be relevant, targeted and applicable. We try to make the money go as far as possible nearly all the money goes to direct to research.

"Our biggest achievement is in raising awareness and funding the various research, which is interconnected. That has led to a very positive outcome to stammerers and made their lives bit easier."

Like all chartable organisations fundraising has been difficult but the Dominic Barker Trust continues to fund research and is happy to receive applications from projects.

Meanwhile, there are hopes the annual quiz at the Royal Harwich Yacht Club will go ahead, along with a resumption of many other fundraising activities.

"We are extremely grateful to those who have done walks, ran races or shaved off beards, whatever they have done to help us, said Eleanor."

"We carry on the drive for funding to carry on research and if people would like a local cause to fund raise from we would be delighted to hear from you."

Their quarterly newsletter is sponsored by Ellisons and volunteers cover as much of the leg work as possible. The board of trustees is made up of its chairman Toby Kramers, Ian Angus, Guy Barker, Sr Steve Davis, Chloe Chancellor, Dr Sally Williams and Eleanor, all give their time freely.

Dom's Fund also has its own range of cards with all profits going to the Trust. Scroll right on top image for donation form.

For more information about Dom's Fund go to www.dominicbarkertrust.org.uk

Tomorrow in part two of UP CLOSE with Dom's Fund: The benefits of stammerers in the work place and those who have gone on to be mega stars.

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