By Francesca Wolf

Living life as a deafblind person, or being the parent or carer of a deafblind child, requires immense physical and emotional resources. Simply surviving from day to day is often a struggle. It can be lonely, too, especially when society seems to blithely ignore the challenges faced by those who lack sight and hearing.

But reaching out and linking up with others who face similar frustrations can make a big difference. It can provide comfort, help, energy, hope. It may also provide a focus for anger so that discontent with how things are can be fuelled into positive action for change.    

These ideas of mutual support and empowerment have been at the heart of Sense for 50 years. They underpin everything, from the first self help group for parents of rubella-damaged children in 1955 to Sense today.

Ten families joining together to provide information and support to members. That was the beginning. Gradually this parent-led organisation grew, found a voice, extended its influence and began providing direct services itself. But the founding principles endured and are realised in many different ways.

 In the mid-1980s, as service provision took off, Sense formalised its local parent-led groups into branches, thus ensuring the central values would survive.
Today there are 14 branches, local, regional and national. Most were set up by parents of a deafblind child but others are led by people with sensory impairments and may involve friends, volunteers and interested people. Groups can be small or large; meet monthly or yearly; have longstanding or more recent members.

They do many things, from tackling people’s isolation to influencing Sense policy and providing a focus for campaigns. They also bring fun into life through social and fundraising activities including Saturday clubs, family weekends, quizzes, bingo, 10 pin bowling, croquet afternoons, sign and swim, pub lunches, picnics, walks, snooker games and opera performances…

All branches are part of Sense and sign a Branch Agreement with the organisation. Relationships between the national and regional parts of the organisation vary. Some send a representative to a national forum which in turn has a representative on Sense’s Council; so a channel of communication exists which allows issues to be brought in from the grassroots up.

A problem shared

Despite differences in character, composition and activities, all branches enable people to meet and share information, ideas and problems. In the words of Norman Brown, branches are “Magic; they are places to be honest, to be helped when you are down, and to help others when you are up.”

Here are a few examples:

Mandie Lewis’s daughter Jen, 21, is deafblind and now lives in a Sense home in Birmingham. Mandie became involved with Sense Avon Group at the start and in 1986 they formed a branch consisting of ten parents with young children as well as friends and professionals.

“It was a place to get support from people who understood,” says Mandie and she recalls her delight when Jen, four, first stood up: “You share these outwardly minor yet absolutely phenomenal milestones and it gives hope to people who haven’t yet reached them,”

Difficult feelings are also shared and the group can help parents who have a devastating experience, such as when a child dies. “At times of great pain and loss the group can be very supportive. We all lean on one another to get through it.”

And there are good times too. Mandie describes how a new parent was amazed to find the group laughing: “She said it was wonderful to hear these parents of profoundly disabled children telling jokes. It’s another form of support, and a very precious one.”

One story among many. All the branch members I spoke to mentioned mutual support. Alison Valentine of the South Coast Branch says, “We are a small community there for each other. The group breaks down isolation and we share problems”. Jill Carpenter, Branch Secretary, agrees: “You let your hair down and say how you really feel when things are hard. You can express feelings of guilt in a safe place and also get practical help. For example a parent might mention difficulty getting benefits and another might say ‘Have you thought about this..?’”

Where there’s a mixture of old and new members there can be useful cross-fertilisation. The East Anglia Group, for example, consists mainly of longstanding members with adult deafblind offspring, but also has two new members whose deafblind children are only five and three.

Elizabeth Royle, a founder member whose son Bruce is now 39, believes this wide age range is an asset as does Leanne Barnes, new chair and mother of five-year-old Mark. “Mark is starting to walk independently and issues are coming up like toilet training and self feeding. Because many parents have already been through these difficulties they can be extremely helpful,” she says. Some older deafblind people also go to meetings, so parents of young children learn and take encouragement from them as well.

The Essex Branch Day Club consists mainly of older deafblind people (aged 50-89) who regularly meet and talk. There are also activities such as music, aromatherapy, walks and visits. Support takes many forms: one member brings her post to be read; or they may discuss problems such as when an Usher member recently had her guide dog savaged. “People get power from being able to talk about problems. Someone will usually come up with a solution,” says Peggy Keeble who organises the day club.

People power

Groups can also act as a springboard for going further, working for better services. Provision traditionally has been meagre, and it is grassroots energy that fuels many developments.

Sue Turner, Kent Branch Chair, says: “Personal experience gives a fuller understanding of the problems, but having a deafblind person in your family is exhausting. Alone it’s very hard, but together we achieve more. Different talents come into play: one person might be a great listener, very good at empathising and giving emotional support; another might be a player in the public arena, ace at fundraising or campaigning for a new service.”

This mixture of talents, harnessed to a real desire for change, has produced some impressive results, such as:

• The longstanding Sense Cymru Branch in South Wales fundraised and bought a chalet in Fishguard Pembrokeshire, which they rent out to deafblind families. Gordon Jones fundraised for the South Wales branch and was then involved in setting up the more recent North and Mid Wales branch which has raised money for many things including Saturday clubs and special toys.

• Peter Holman’s son was five when Peter became a founder member of the Devon Branch in 1984, set up to provide support for local families who had children with multisensory impairments. “Initially we had no set target, but soon realised we’d have to consider what would happen when our children reached 18 as there were no services,” he says.

Peter involved local businessmen and professionals in the group, which has become a prime mover in the establishment of Andlaw House Exeter in 1994 , two flats, each for five deafblind young people , and other services that followed, including Applemead House where his son, now 26, lives. He is now also a trustee of Sense:

• Families in the Kent Branch lobbied for residential provision and were prime movers in the establishment of a residential unit in Maidstone. Branch members continue to push for local amenities and the best kind of housing for people with learning disabilities.

Recently they persuaded a local volunteer bureau to include a separate category for sensory impairment. “Small things make a difference in the end,” says Sue Turner.

• The day club in Essex was created to meet the needs of older deafblind people. Three people who attend are also involved with social services planning teams so the group has its say about local services.

• The East Anglia Branch set up a Leisure Library containing toys and activities for older as well as young deafblind people.

• Saturday Clubs are a popular and fruitful environment for fun, friendship and support. Many are jointly organised by local parents and Sense and there is often branch involvement.

• Sense Essex, Kent and South Coast Branches, supported by the Voluntary Services Team, organised a hugely successful Family Weekend at Butlins, Bognor Regis last year. Deafblind young people enjoyed Leisure Club activities while parents/carers had a break. Another family weekend will occur this year.

• Sense Avon Group formed a Parents Resource and Toy Library within one year of first meeting. Threatened with eviction, they found a new base in Kingswood and the combined energies of branch and Sense national led to the formation of Woodside Family Centre which today hosts branch meetings, Saturday clubs, a toy library and other activities.

The branch continues to fundraise and play an active part in developments.
Mandie Lewis says the need now is for local residential provision:”We are the generation who don’t take no for an answer. Instead of accepting when we are told something is impossible, we try to find a way it can be done,” she says.

National Groups

Among the branches there are two national groups set up by deafblind people themselves, Usher UK and the Hearing and Sight Impaired Group (H SI). While those in Usher UK use signing to communicate, those in HSI, many of whom have Usher 2 or 3, generally use hearing aids with speech to communicate.

The Hearing and Sight Impaired Group aims to combat isolation and provide mutual support to members. It has a 12-strong committee, several smaller groups, and holds regular meetings as well as social events including a recent riverboat trip on the Thames. “We would also be happy to hold joint events with Usher UK where both groups can benefit,” says Mark Pampel, HSI’s current chair.

It’s an active campaigning organisation, too, fighting for various causes - among them the continuation of Sense’s Peer Mentor Scheme; updated and working loop systems in cinemas and other public places; and availability of subtitles on TV.

Mark Pampel says, “We are also putting pressure on broadcasters to remove background noise by using directional microphones. Radio 3 has a commentator speaking over concert applause while LBC has background music at the beginning of news reports. It’s difficult to decipher the words if you have a hearing problem.”

Young people

Two recent weekends, a Young Usher weekend and a weekend for youngsters with Charge called The Shape of Things to Come - have focussed particularly on the needs of young people.

Their objectives included allowing peers to meet, share experiences and build relationships. But beyond this they aimed to build young people’s confidence and skills, express themselves creatively and think about the future, what they want out of life.

Family activities

Some people can’t travel long distances to a branch or simply don’t wish to belong to a fixed group. So in 1997 Sense established the Family Network for people for whom mutual support is still valid, but who don’t necessarily want to join a local group to access it.

Created and led by families, this national network enables people ( parents with deafblind children, siblings, deafblind adults, people with Usher and their families, friends, volunteers, Sense staff) to get to know and support each other, share information and keep up to date on developments. It also gives them a stronger voice within Sense and other service providers.

It achieves this by organising a range of events to bring people together, such as Family Weekends, Saturday Clubs, holidays and conferences. These events enable people to unwind, enjoy themselves and make contact with others. Events are often organised by deafblind people and families themselves, with support from the Sense Voluntary Services Team.

Family Weekends have a long history. Gini Bartlett, Sense Liaison Officer for Sense West has organised them for 12 years and believes they meet a deep need. They bring together parents from all over the country, some of whom are quite isolated, and around 50 attend each time.
“I know from my own experience how hard it is to have a disabled child. People without this experience can sometimes be judgemental, so being able to talk to another parent is enormously useful,” says Gini, whose deafblind son Ian is now 42.

“You can discuss deep concerns such as what will happen as your child gets older or who will care for a child if the parents die. Parents can also safely voice hostile feelings or the guilt we all feel, about not being a good enough parent, or not being able to cope or do the best thing for our child. I felt incredibly guilty when Ian went into residential care, even though he was 25 and it’s been very good for him. Talking to someone who understands, that is empowering.”

Unsung heroes and heroines

So, 50 years on, the original ethos of Sense is not only alive but growing. Parents and carers of deafblind children, and deafblind young people and adults, are striving for changes which will enhance understanding, close the gap and create a more equal society.

This struggle to create a world where deafblind people are no longer ignored is demanding but energising. Sue Turner puts it well:

“They are the unsung heroes and heroines. The cards life have dealt them as parents, as a deafblind individual, as a family, act as a catalyst for them to achieve greater things not only for themselves but for other deafblind children, people and their families. The energy comes from the need.”

With thanks to: Liz Ball, Leanne Baines, Gini Bartlett, Jill Carpenter, Frances Hampton, Gordon Jones, Peter Holman, Mandie Lewis, Peggy Keeble, Joff McGill, Mark Pampel, Elizabeth Royle, Sarah Teichler, Carol Thomas, Sue Turner, Alison Valentine, Margaret White.

Sense was founded in 1955 by Peggy Freeman MBE and the late Margaret Brock MBE, whose children were rubella handicapped. It was a self help and support group for parents of children who were born deafblind as a result of maternal rubella. They shared information and pressed for services.

Margaret White was a very early member:

“I heard Peggy Freeman - a founder of “The Rubella Group” which eventually became Sense - talking on Woman’s Hour in 1961 so when my rubella-handicapped daughter, Helen, was born two years later, I sought, and eventually managed, to contact them.

Sense was founded entirely on the principle of mutual support, empowerment and self help. We used to send in our problems, ideas for solutions or bits of equipment to be published in the newsletter, which was a hand-cranked Gestetner publication. It was lovely to have that kind of network.

I wrote to my local newspaper which made it into a “sob story” but subsequently I managed to contact families in my area, Warwickshire, and later we established a branch. I did a lot of voluntary work going round the Midlands visiting families and for 17 years I was associated with the Sense committee, at one time as vice-chairman. Gradually branches developed around the country, we ran weekends and conferences, and we set up resource centres, group homes and family centres.

When Helen was born the paediatrician said ‘Don’t ever expect this child to amount to anything’, and I walked away in floods of tears. It’s 42 years later yet I still hear parents describing the same thing.

You feel so alone when it happens. My daughter had had seven eye operations before she was two and a quarter. Peggy, Margaret and other parents supported me all through. Both then and now, the wonderful thing about Sense is the way parents get together to share their problems, ideas and successes. It makes all the difference.”

The Rubella Group became The National Association for Deafblind and Rubella Handicapped Children in 1966, in 1974 it dropped the word “children” from its title and in 1983 it was renamed “Sense”.

The CHARGE Family Support Group

The CHARGE Family Support Group has strong links with Sense. It operates on a national basis across the UK, bringing together families coping with this difficult condition. There are 175 current members and Carol Thomas, mother of five-year-old James, is the Chair:

“The Charge Family Support Group enables parents to network and meet face to face, because they learn so much from each other,” says Carol. The geographical spread means this only happens once a year but there is also database of parents willing to be contacted.

“Someone might ring up in desperation, say, with a five-year old child with ENT and educational problems. Or a parent might need ideas about food or activities. We put them in touch with another parent for information and management ideas.”

As well as the Annual Family Day, other activities, and database the Group publishes a quarterly newsletter which includes pen portraits of children. “It’s useful for parents to get hope and know they are not alone,” says Carol.

Recently the Charge group worked with Sense on the Young Person’s Project, organising a creative weekend for 16-26 year-olds called The Shape of Things to Come.

The Charge Family Support Group relies entirely on goodwill, effort, voluntary fundraising and the main problem is getting enough volunteers to run it. “But people who do get involved, giving support, sitting on committees, organising family days, gain a strong sense of empowerment,” says Carol.