Sense Information and Advice Living with Usher syndrome Useful tips when you meet someone with Usher Communication When you want to start a conversation, tap on or gently hold the arm of the Usher person. Remember to remain where you are standing or sitting so that they know you are there and can locate you easily. Say or sign your name when you start talking. Sighted hearing people recognise each other by their appearance and voice. Somebody with Usher may not be able to do this. If possible move to a well-lit area before you start a conversation. Keep the direction of light to the side, behind or above the person with Usher and remember to check with them that their eyes have had time to adapt to the light. Avoid standing with light coming directly from behind you, for instance sunlight, a bright window or doorway, or a bright lamp. This will place you in shadow and the glare may be uncomfortable for the person with Usher. Allow the Usher person to decide the best distance to stand or sit from you in order to follow your signing, finger spelling or to lipread you. About four to five feet is reasonable, but remember, everyone is different and the distance may vary according to the environment and lighting conditions. If you stand too close, the person with Usher may not be able to see your hands and / or facial movements. Be aware of their `visual frame’ and confine your finger spelling and signs to within this space. Ask the person with Usher to describe how much of your face and body they can see at a certain distance. For example they might be able to see your face and chest from a distance of five feet. When you end a conversation, say or sign that you are leaving. Don’t assume that they will know that you have gone. Orientation and mobility If somebody else wants the attention of the person with Usher, say or sign their name to the Usher person and specify where that person is standing or sitting. Don’t just point at somebody who is trying to attract the attention of the person with Usher. Offer your arm for guidance, particularly in dark, poorly lit or crowded areas. While the person with Usher may be able to manage independently, they will probably appreciate the offer of help. Be ready to warn the person of low furniture, steps or any other low or overhanging obstacle. Don’t assume that they have seen potential hazards. Don’t grab the person’s arm when they need guiding in the dark. This can be frightening and disorientating. Take time to stop, introduce yourself and offer assistance. Finally Don’t be afraid to ask the person with Usher if they need help. Sources of help Sense Sense is a national charity that supports and campaigns for children and adults who are deafblind. We provide expert advice and information as well as specialist services to deafblind people, their families, carers and the professionals who work with them. Sense aims to help people with Usher to live as full a life as possible, and provides a range of services: * Information, advice and support to people with Usher and their families - particularly when the condition is first diagnosed. * Opportunities for people with Usher and their families to meet together - both face to face and online. * Training for education, health and social service professionals to understand Usher syndrome and its effects. Please contact the Information and Advice Team for further information: Tel: 0845 127 0066 Fax: 0845 127 0061 Text: 0845 127 0062 Email: info@sense.org.uk www.sense.org.uk Sense 101 Pentonville Road London N1 9LG Usher Life www.usherlife.co.uk This is an independent, dedicated, UK website for people who have Usher syndrome. The site includes details of forthcoming social events for people with Usher and their partners. Hearing and Sight Impaired Group (HIS) The Hearing and Sight Impaired Group brings people together to combat isolation and provide mutual support to its members. It holds regular meetings as well as social events. It also campaigns on local and national issues. For more information contact Sense. Counselling. www.bacp.co.uk. Some parents may find it helpful to talk to a trained, independent person about their feelings relating to having Usher syndrome in their family. Your GP may know of a suitable counsellor working locally. Alternatively contact the British Association for Counselling & Psychotherapy for a full list of accredited counsellors working in your region. Details on the website above. This website provides guidance on how to contact a qualified counsellor in your area, together with full listings. This is one of a series of factsheets that provides information and advice for people with Usher and their families. They were put together with the help of people with Usher, their families and professionals experienced in this area. If you have any comments or suggestions about the content of this factsheet, do please let us know.   Sense 2011