Justine Jones tells how she turned her world around
For the much of the past 10 years, Justine Jones has lived an isolated existence, often in agony and unable to move. Bedridden, her only respite was when a care worker would pop by to help prepare meals and give her some gentle exercise around the home.
Amazingly, Justine is only 24 years old and has had rheumatoid arthritis since her early teens. This pragmatic, articulate young woman decided the condition would not limit her zest for life and recently she applied to go on an individual budgets programme with Bromley council, so she could live a more independent life. She admits the decision transformed her life.
Justine is now able to make her own decisions, lead her own life and decide who she employs as home help and when they should work for her. Justine says the experience has been so liberating that she is now working as a champion with other people on the individual budgets programmes; to take people like her away from institutionalised care and bring them back into the community.
I spoke to Justine and many other people like her at a council information day in Bromley. Young people with disabilities, older people who are disabled and unable to cope at home on their own, these people rely on state help – often begrudgingly – because they have no alternative.
Theirs is a lonely life spent almost entirely indoors, prisoners in the own homes. Their only window on the world is an occasional visit by an overburdened and grossly underpaid care worker.
At this point I want to tie their lonely lot with the much wider debate going on about online networks, social media, the Big Society and a host of other initiatives to help bring a sense of community together across the UK. Much of this work is voluntary, and given the state of the country’s finances, will remain so.
Many of the projects now developing are noble. People around the country are setting up hyperlocal websites – small, neighbourhood projects – to try to bring disparate communities together to talk about important local issues. Unconferences – arenas where citizens can speak out about their lives and communities – are growing in popularity.
Here are a couple of initiatives:
http://neighbourhoodsonline.org/
http://journallocal.co.uk/2010/09/25/hyperlocal-cafes-continue-the-conversation/
The individuals behind these projects are naturally suspicious of big and small government. But they often fail to see that the public sector helps to create and maintain links with some of our most isolated and vulnerable people.
Meanwhile, local government is also getting involved with community building. Often savvy public sector web developers set up cheap wordpress websites to help people engage more with their local services. These employees are often frustrated at the way the corporate departments of local councils place a stranglehold on communications. So they set up their own sites, with or without corporate permission. Hackney’s wordpress site is a good example of this, as is the more developed Bedfordshire website.
http://hackneytrasc.wordpress.com/
http://www.letstalkcentral.com/about/
Unfortunately, initiatives by private individuals/groups and the local council seldom overlap. But this impasse will simply continue to hit some of the most needy people in society – people who would otherwise be active participants. Woman like Justine, Doreen and Audrey (all on video) are eager to lead more connected, active lives as a part of the local community and not live as peripheral outsiders looking in.
In my view that’s where private initiatives can dovetail with those of the public sector. Local councils are not able to act as a panacea for poor, lonely and disabled people – especially given their new funding constraints. So it’s probably time that the people behind the private initiatives talk actively to the public sector. Together they might just make a difference to many people’s lives.