Computer software is enabling people with learning disabilities who do not communicate in traditional ways, to telltheir own stories, as Mary O’Toole explains.
I wonder where you are reading this article. Wherever you’re reading it, chances are you’ve already indulged today in the title theme. Surely not… “No kids to read to…yet”, “I don’t think I’ve told any fibs today”, “I haven’t even started my novel!”
But listen to yourself: “Please put the kettle on”, “hey, you’ll never guess what I’ve just seen!” These are beginnings of conversations of a particular kind, the beginning of a story. Switch on your inner ‘story monitor’ and you’ll find that nearly everything you say or do can be regarded as part of a story.
It seems that we humans construct our lives as stories, not disconnected actions, whether we are aware of it at the time or not. We then save our stories as memories. Each experience is usually remembered in a context, which in turn is part of a larger experience surrounding it; so small stories link to and lead into larger ones. We make a continuing narrative that allows us to know our identity and define ourselves as individuals.
Not only do we store memories as ‘stories’, but we continually rework our remembered stories. This ability to retell and reintegrate our stories is regarded as important for psychological health in response to major life changes and the ageing process itself.
In terms of people with learning disabilities, if practitioners are to deliver real ‘personalisation’, they must find a way to allow the full complexity of people’s lives, and as many as possible of their stories to be taken into account. I’ve discovered a way of doing this for my sister’s stories, but to explain more, I must tell you one of my own, which also overlaps hers…
Anne
My sister Anne was born with brain injuries due to oxygen deprivation during labour. The speech centres in her brain had been permanently damaged, so she cannot form recognisable words, although if you know her well, vocalised communication is possible, some of the time. Added in were intellectual disabilities – in those days termed ‘mental handicap’ – and a ‘mental age’ of eight. As we grew up, very much together, and soon joined by two brothers, it was clear that communication difficulties were always going to be an issue.
Good practice recognises that people can and do communicate in very different ways, and starts with responding to requests for very basic needs: a drink, a snack, a special diet. Recent policy initiatives such as personalisation and person-centred planning focus on ascertaining and communicating much wider needs, wishes and hopes of individuals, and such plans are often now communicated in very imaginative ways.
But what about the deep complexity of ourlives and their stories, which are so important to establishing andmaintaining identity? While my sister moved into a shelteredvillage community some years ago, she returns to her family homefor long weekends nearly every month. Like most families, we takecopious quantities of photos, keep albums, and recount countlessstories of what we did as children. Anne has a rich collection ofsuch stories, but there were difficulties if she wished tocommunicate them to support staff because she couldn’t do thisherself. Mum and Dad prepared a life book photo album, whichhelped, but was full of so much detail that I felt staff were attimes a bit overwhelmed. If only that album could speak! Alightweight, robust story-carrying device, which could alsofacilitate ‘real time’ communication was needed. About 15 years agomy parents bought Anne a very early ‘assistive’ device. This was achildren’s learning toy for spelling, but had the advantage of alarge, clear, and fairly slow-moving display. It worked up to apoint, but Anne would revert to scribbling on bits of paper, whichwere often difficult to decipher. Obviously, it couldn’t storeimages or stories, and neither could it speak.
Multi-me
However, books, or rather computers, werebeginning to speak and I began to conceive an informal project thatmight tick even more story-boxes. I called what was needed a’laptop lifebook’.
This came closer in 2010 when the iPad waslaunched, followed by many other tablet PCs, but a software systemwas still needed to do the talking. Luckily, I discovered’Multi-me’, the brainchild of Charles Levinson, formerperson-centred planning (PCP) facilitator at Equal People,Kensington and Chelsea.
‘Multi-me’ can be accessed through a web browser from any desktop or laptop computer with an internet connection, although it is yet to be optimised for smartphone and tablet devices. I use it to upload my sister’s ‘old’ stories, and build new ones about her life on a day-to-day basis. It’s tremendous fun to do and it will soon, I hope, engage support stafftoo, so we can exchange stories, pictures and maybe even videos.Someone described it as ‘a bit like Facebook’, but it’s unique, andtotally secure. Each person is only part of the network that isarranged for them, so there’s no risk.
Multi-me’s unique selling point, I feel, is its potential for enabling people to capture andrecord the ‘stories’ essential to communicating a person’s life asthey are made, not in ‘catch up’ mode once they reachunder-resourced adult services.
Many people in adult social caresituations could enjoy life more with the addition of a system suchas Multi-me. By building networks that include support staff,friends and family, much more could be created. Projects can be runand planned and ambitions achieved.
The practical potential of software like Multi-me extends beyond life stories and PCPs. For example, I’m involved in the family and friends group that meets atmy sister’s place, and Multi-me has potential here for running fundraising projects, virtual newsletters or just sharing photos.Many people are wary of doing this kind of thing on Facebook; Multi-me feels friendly, and you are not plagued with advertising pop-ups.
It’s not a ‘quick fix’; Multi-me and other similar tools need a lot of ‘support’ input to set them up and get them to auseful stage for most individuals with learning disabilities. Of course, some people will be able to use them unaided, just as theyuse smartphones now.
Software such as Multi-me can have uses forpeople of all abilities, extending to adult onset intellectual impairments and dementia. It was certainly my family’s experiencethat much ‘challenging behaviour’ is simply due to communicationproblems and Multi-me would certainly help in this context. But Ibelieve it’s most important role may lie in improving communicationfor those with intellectual and physical disabilities thatcurrently make their lives a ‘closed book’. I’m just waiting for the Multi-me iPad app, and then Anne can have music (and Multi-me)wherever she goes, just like the fine lady in the children’s rhyme,which takes us back to storytelling again. We’ve come a long way since Dad bought her that ‘spellchecker’.
Multi-me beta is currently being piloted with more than 20 organisations in the UK and beyond,including partners from five schools, as well as a number of localauthorities and support agencies. Multi-me is working with The RixCentre (University of East London) as an evaluation and qualityassurance partner.
The trials aim to engage a diverserange of participants, including: children and young adults withspecial educational needs and alternative needs, adults and olderpeople with autistic spectrum disorders, mild to multiple andprofound learning disabilities, as well as those who are hearingimpaired and use Multi-me as a signing tool among otherthings.For more information on Multi-me go towww.multi-me.com. To register your interest in participating in thebeta trials, contact Charles Levinson, company director by [email protected] or calling 08453 888 590.
Mary wishes to thank her sister Anne and her family for their contributions in recording Anne’s life story.
This feature first appeared in the December 2011/January 2012 issue of LearningDisability Today.
