Feature
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Overcoming isolation
"There are only two ways to live your life. One is though nothing is a miracle. The other is as though everything is a miracle." - Albert Einstein
In 1996, Portuguese Nobel prize-winning author Jose Saramago published a novel called Blindness. In it, an entire society breaks down after its citizens are all struck with a contagious and mysterious white blindness. Some people retreat into themselves; some use it as an opportunity to exploit those around them, while others rise above their circumstances and reach out to help their fellow human beings to survive in an unfamiliar world.
There are as many responses to blindness and the potential downward spiral into social isolation as there are people. Fundamentally, we are all social creatures; we need other people, and our eyes and ears are the means from which we glean most of our information.
Research into the costs of blindness just released in Australia has revealed that blind people are twice as likely to feel socially isolated as sighted folk and therefore are at triple the risk of depression.
The feedback consistently received last year during chief executive Paula Daye's national roadshow was that members were calling out for more social contact from the Foundation, with their peers, and in their wider community.
The Foundation has responded by making research into isolation's key contributing factors a strategic goal. "Before deciding what to do, we need to carry out more research," Paula says. "Our own costs of blindness research project will be complete in a few months. It's a start. And we are actively resourcing and supporting our community committees, who do a wonderful job of networking locally."
Social isolation does not only occur when members are geographically isolated and unable to access transport or forms of communication such as newspapers. As Paula explains, it can happen while people are living in the midst of others.
"At one roadshow meeting, a woman attended who lives in a retirement village yet she felt isolated. She was upset and feeling low. We introduced her to other people at the meeting with similar eye conditions and, at the end; I said to her, 'How are you?'
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'I'm having a ball,' she replied. Her whole experience had turned around."
Blind children can also easily feel isolated in mainstream schools, where they do not have peers who share their experience. There is frequently a lack of understanding in society of the issues blind children and their parents face. In one school, a child was forced to use a brailler that was located in the library 10 minutes walk away because parents of other children had complained that the noise the machine made interfered with their children's concentration.
Asta Osborne, a child and family social worker with the Foundation, says the potential causes of a child's social isolation are many and varied. They include geographical isolation, fear or grief, lack of community support, multiple disability and lack of regular contact with social workers.
"Children with multiple disabilities are often thrown in the too-hard basket in terms of services," Asta says. "And some of the parents' support networks don't necessarily understand blindness. The social and emotional strain on families, resulting from isolation, can be enormous."
Gloria Campbell, who is the Practice Adviser for the Foundation's Deafblind Services, echoes this view. She says that some deafblind people no longer even have family support because those families cannot cope with having a member for whom communication is a constant challenge. Gloria knows that support from a team of experienced professionals can make a huge difference.
A six-month pilot scheme led by Gloria matching Communicator Guides with deafblind people is halfway complete. Paid sighted Communicator Guides spend an average of three to four hours a week with members, assisting them to achieve whatever they want. For one woman it was a trip up to the top of the Sky Tower.
"Some were really reticent to start with. That new guide is an intrusion in their lives, but I'm seeing such a difference already - not only in those few hours. The confidence to try new things spreads out into the whole week."
"Have confidence that if you have done a little thing well, you can do a bigger thing well, too." - David Malcolm Storey
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Recreation and leisure activities can re-create social connections lost through loss of paid work. Marina Hanger, recreation advisor in Dunedin, organises have-a-go activities. She invites clubs to teach activities such as chess, cycling and first aid to members. It is a safe and supportive way for blind members to find out if they enjoy certain activities, and for sighted people to overcome their own attitudes to blindness.
"Every little success builds confidence," Marina says. "I feel strongly that it's not a matter of handing things to people on a plate, but helping people to drive their own challenges forward. Just because you have a vision impairment doesn't mean the world stops for you."
One of the blind cyclists in Dunedin from the have-a-go activities is now training to take part in a triathlon. "We need a goal to work towards" she wrote to the Foundation. "It's no good training all the time with nothing to strive for, so we're going to give the triathlon a go."
The Foundation's peer support programme also runs residential camps for blind and deafblind children and, more recently, adults. At this year's national deafblind residential programme, one participant said he had been becoming reclusive and the residential programme had made him realise that he did not want to go back into that inner space anymore. It is one of the many positive outcomes of the peer support camps that many participants make and retain friendships around the country.
So what can people, who are experiencing isolation, do to reach out for social contact?
Members can contact their local community committees about upcoming and regular social activities, and also make use of the Foundation's telephone information service (TIS) to listen to daily newspapers and other happenings.
At last year's roadshows, older members also put forward many suggestions of self-help ways to overcome isolation.
These included starting up a local telephone tree so each person on the tree receives a "how are you?" call once a month (contact your community committee for assistance in starting one), starting a book club (using talking books from the library), or creating a newsletter line.
These might be small steps back into the world, but as Saramago's novel Blindness tells us, it is when we learn to turn around, see and help others who are struggling with adversity, that our connection to the world reinvents itself.