In our Facebook page, which gradually increases its ‘Like’ we have recently opened a discussion in italian and one in english with the aim of collecting tips to survive with Usher Syndrome.
People who are affected, but also those who live and/or work with them must adapt certain behaviors to the needs of the patient. The aim is to enable communication, to facilitate some everyday actions made difficult by the sensory deficiencies and to alleviate the psychological burden that a deafblind person is confronted with every day, regardless of the stage of degeneration of visual and hearing.
On the website of the FEDERAZIONE ITALIANA ASSOCIAZIONI RETINITE PIGMENTOSA we found an interesting article which includes some tips.
We translated them here, adding some more to contribute to their spread and to stimulate the sharing of other valuable suggestions. Sometimes the actions taken by a person with retinitis pigmentosa or hearing loss or Usher are repeated so as to be automatic, but making the effort to transform them into words and communicate them to others, could help those who have never experienced some of the techniques and situations.
• Being too close to the person when you communicate in finger spelling or written or spoken language.
• Stand to the side when you wants to get his attention.
• Stop anyone trying to attract his attention.
• Hold the arm when it needs a guide in the dark.
• Avoid driving the visually impaired person from behind, with his hands on his shoulders. This method is devastating because the person feels pushed to the danger and feels like a shopping cart.
• Speak with a light behind your back. The visually impaired person also suffers from glare and see the face of the interlocutor completely dark, without being able to read lips,
• Start a conversation in a slightly darkened room.
• Speak softly. If environmental conditions do not allow an adequate volume of voice, better not to talk.
• To be approximate when you indicate what you speak about.
• To assume that the person sees furniture and low obstacles.
• To be afraid to ask if he needs help
• To place objects on the ground within the movement paths. If you have to, you must say. Ex: John, be careful, I put this bucket here here. Try to keep it in mind.
• Moving objects without warning.
• To allow the person to choose the distance to read the written language, reading lips, the sign language (about 4-5 steps).
• To say your name when you start talking and tell when the conversation is over.
• To offer your arm to guide her/him in the dark, ask her/him if she needs assistance.
• To receive the light from the side or from behind.
• To try to speak as clearly as possible, maybe exaggerating the lips movements if needed.
• To look in the face as mcuh as you can when yu talk
• To locate the gestures and finger spelling in the chest.
• To tell the person when there are low furniture, obstacles, unexpected steps.
• To ask if he/she needs help.
• To maintain the position of objects and things. Chairs, pots, pens, books.
Can you think of anything else?