By Wilma Brass
I often say; your body is the biggest thief you’ll ever meet!
Or: The human body; wonderful design, LOUSY manufacture!!!
Being born with a ‘stable’ disability, or getting disabled at a very young age, is one thing. It’s unfair, but from then on, you learn the tricks and skills you need to function to the best of your ability.
You start from ‘point zero’ and work your way up from there. As was the case with Helen Keller, who fortunately had a supportive family and more importantly, Ann Sullivan.
When you are totally blind, you do not try to see but find other ways of coping with it. The same is true for when you are totally deaf, you will not try to hear; you communicate in a different way. When you are totally Deafblind, the challenges are that much greater, even ‘gynormous’, but it is still ‘point zero starting point’.
But when you are born with a progressive disability like Usher syndrome, (or MS and myriad other conditions) no matter what you do, you are moving TOWARDS point zero.
For those of us who try to see and hear and function in a hearing-sighted world, the energy level needed is growing exponentially with the increasing disability; it often is exhausting. What takes maybe 5% of a seeing /hearing person’s energy and brain power, will take up most of ours (75-95%)! Consequently we appear to have a very short fuse, are intolerant, etc while in truth often the coping with the disabilities is as much stress as we can handle and anything else on top may be the last straw.
People think that blindness is worse than deafness.
I tell them: ”blindness frustrates, deafness isolates.” BUT people are right in that blindness will frustrate possibly umpteen times in one day while deafness ‘only’ isolates perhaps a few times per day or per week even. The frequency of the occurrence of being confronted with each disability is very different, but not the impact.
People generally do NOT understand the impact hearing loss has; after all you can do just about anything other than use the phone, or so they seem to think. They do NOT understand the alienation and isolation that follows, because communication has broken down. They do not understand that it is not just a matter of loss of volume but even more the loss of an ability to discriminate/distinguish different sounds.
“Alo when you a li-ning you a conanly illing in all the mi you ave no hur” … … … also, when you are listening, you are constantly filling in all the bits you have not heard. Remember, this is how we hear ALL THE TIME!!!! So constantly the brain has to work out all the misheard and not heard syllables and letters. The most important ‘thing’ in people’s lives is relationships. Hearing loss has a severe impact on being able to sustain this (people who are born deaf relate well in the deaf community, but usually not outside of it, although cochlear implants are changing this dynamically). And we haven’t even begun to look at all the other pleasures, of music, birds singing, the different sounds water can make, etc.
As we are a society that uses vision as the major sense, people respond to this handicap with a lot more sympathy, as it is the disability that’s ‘easiest to understand’. Luckily, Australians are accepting that a lot of legally ‘blind’ people can still see something and use their limited vision without judging one as a fake, at least in my experience, (there will always be exceptions of course)
But, the two together as one condition, in its many possible variations, is rarely, rarely understood by those who do not have to grapple with it and sometimes even by those who do, including the person suffering from the condition.
What often happens, when discussing my challenges with people, they will offer ideas and advice relating to my blindness, and I will have to remind them “But I am deaf!”, and when discussing my challenges regarding deafness, I will have to remind them “But I am blind!”
To complicate things, the human brain is a marvellous compensator and fills in all the blind spots, not accurately mind you, but it gives you a full picture. The eyes/brain LIE like a trooper, about what you can see, often it is CONFUSING, sometimes it is dangerous!
In spite of all this, I play piano, I paint both reasonably well. To quote Nightbirde: (AGT audition 2021)