Finding ways to pass time with the restrictions of dual sensory loss is difficult to say the least. Gadgets to enhance life for blind people aren't necessarily of use with dual loss, the same applies with hearing loss gadgets. Severity of acquired dual sensory loss varies a lot from person to person, some have a little more vision while others have a slight bit more hearing, as luck would have it I seem to have one of the highest levels of loss to both senses, unlike those born with disabilities those with acquired issues can suffer a sense of bereavement, after all it's a loss and life changing occurrence. Things I used to enjoy such as sewing, cooking, listening to music are out of reach, thankfully due to a marvellous piece of technology I can still read books, abet painfully slow. The gadget is a high performance magnifier attached to the TV and operated via a mouse. Its a case of scanning over each word with the mouse and viewing it in high density on the screen. Simple chores such as ironing are hit and miss and fortnightly shopping is an utter nightmare, someone has to accompany me and whoever has the unfortunate task is forced to tell me the brand, size and price of every item. Apart for being almost totally blind I'm colour blind too. The privilege of selecting my clothing usually falls on my teenage daughter. We're the same clothes size which is handy for her and means the chosen clothing more often suits her best. On the plus side it means I'm a pretty trendy mum and grandma!
I'm blessed with a wonderful support worker who's help is invaluable. On advice I applied for 12 hours support per week, it would've allowed me to get out and about even if only to go for a cup of tea or a walk. However local cut backs meant the 12 hours was cut to just 3 hours per week. It means that precious time of freedom is reduced to her making phone calls for appointments etc. We don't have time to do anything other than I was awarded just three hours per week. It means my only escape from home apart from the shopping trip is when working as a communication instructor or to attend meetings. On these occasions because I represent Deafblind Scotland, guides proficient in dual finger spelling and electronic note-takers are provided free. These services are also provided free by the NHS for hospital/doctor appointments though its only recently that came about. That aside the only other activity I can participate in without having to worry about cost of communication assistance is Labour Party meetings. Be it an appointment or other activity I'd be liable for guide fee's (approx £15) and note taker fee's (approx £45 per hour).
Back on the subject of pastimes. Occasionally I'm asked to take another deaf/blind person along to my talks or classes. These people were just like me not that long ago. Withdrawn, lacking confidence and desperately in need of something to help them feel valued again. The majority of dual sensory loss people and acquired deaf people are reluctant to admit they suffer sensory loss, having difficulty conversing brings strange reactions from others, more often people assume there's some sort of mental problem rather than sensory, there's stigma attached to invisible disabilities, what people can't see they can't understand so judge instead.
On one occasion I was asked to take someone who was born deaf, blind, and mute to a class with me. I'd never met anyone born with multi-impalements before. With his guide finger spelling onto his hand, he signed back explaining about his life living in sheltered residency, he had people to cook and clean for him, iron and wash his clothes and sit with him for a few hours per day for companionship.
“For many disabled and elderly people, the only companionship they have are the people paid to speak to them.”
he spoke of his only real hobby – Lego kits. He had no idea what his creations looked like his only sense was touch and he spent most of his days and evenings creating objects. I had to leave the room for a few moments to collect myself. I cried for several minutes, like all people born without senses he couldn't understand how much life he is missing out yet in his own way he is happy. But for me, and those like me who have known the joy of music, laughter, looking up at the stars and seeing rainbows reaching across the sky in glorious colour dual sensory loss is agonising and frightening.
I have speech, but the reality of endless future days and nights with nothing else in life other than fixing unseen objects together and waiting for someone to spell words onto my hand hit home hard...
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