Beyond Words

“Home comes in many different shapes and sizes but whoever we are and wherever we live, we need our home to be the place where we feel safest. That’s not always possible for reasons of finance or family turmoil or because a disabled person is deemed too needy to be supported at home. My life’s work has revolved around trying to implement the principles of the Ordinary Life movement for people with learning disabilities,  that each person is entitled to an ordinary Life in an ordinary house in an ordinary street with the support that they may need to be able to live safely and fully. Such support must include homemaking- a skill rarely found amongst the repertoire of direct support staff/ carers who are working in the community.”

These are the words of Professor Sheila the Baroness Hollins, independent crossbench life peer in the House of Lords, and Emeritus Professor of Psychiatry of Disability at St George’s University of London, and patron of Home Renaissance Foundation.

Beyond Words is the name of the charity founded by Sheila, Baroness Hollins in 1989, which produces picture books to help people with communication difficulties live safely and fully. It came out of her personal experience with her son Nigel who has learning a disability. In a recent article with The Guardian’s Saba Salman, Baroness Hollins explained that it was through pictures that she could help her young son understand and be prepared for the world outside his home, “When we put things into pictures, he felt more in control.”

Since 1989, Beyond Words has developed 59 titles covering a wide-range of topics from Falling in Love and Cooking with Friends to Getting on with Cancer and other health issues. At the time of writing, the charity is working rapidly to bring
out a book to address the recent health crisis: Beating the Virus. The pictures articulate, as no words can, some of the anxieties and joys of living in community, and offer explanation, familiarity and comfort. Over 100,000 copies have been distributed or sold and each title involves 100 learning disabled people as advisers or authors. There are 60 associated book clubs with 350-400 members. Nigel Hollins, now 47, is just such an advisor and runs one of the book clubs in Surrey. As his mother says “People see Nigel in the shops, cafe or train station. He has a life in the community.”

The books in themselves are a valuable resource to a person with communication difficulties, but their contribution is overwhelmingly enhanced by the presence of the care-giver who sits alongside exploring and listening page by page. Each book mirrors the loving patience and determination to nurture and prepare a child for a full and meaningful life.

The role of the home in this preparation, passing on practical skills and values with love and care, is both foundational and fundamental.  These two words, although on the surface synonymous, help to tell the wider story of all the home offers to the individual and to the society in which that individual will take his or her place. Foundational, in that what is learnt – for good or ill – in our early experiences of home will underpin our experience for a lifetime. Fundamental, in that the intrinsic qualities of home as a place of nurture, and the sharing of skills and values, shape  communities where we can all continue to feel our lives have dignity and meaning.

At the end of her interview with Saba Salman, Baroness Hollins is asked what hopes she has for her son, “I hope Nigel will be so embedded in his community that there will always be people who’ll look out for him, love him and care for him after I’m no longer here. That’s what every parent wants,” she replies.

Beyond words.

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