The other morning, I was almost home and met a lady with a little dog. We chatted mostly about me and how I was. Then she crossed the road and went into her own house. Yes, she was the daughter of our closest neighbour and I did not recognise her, not seeing her face or fully hearing her voice. If I had known who she was, I could have asked her specifically how things were going for her with a current problem I know about and it would not have been a one-sided conversation. So why can’t I overcome my embarrassment and say ‘who are
Yes, I guess I am. But I see colours and shapes and I can still hear some birds. I can’t see to read and I mis-hear so much it is becoming embarrassing.
The issue is, however, that it is not about me. Deafblind is about millions of individuals , each with his or her own history, baggage, level of intelligence not to mention sight or hearing ability. Some are well loved and supported, some alone, embarrassed about their condition or even angry about their circumstances.
This book, autobioblography, will hopefully help you understand what is going on for deafblind people most of whom can see and hear a bit. It might also help you understand the pitfalls of categorising any community member because in the detail members may have little in common. On the other hand, of course, we do need to define the deafblind community so that society and each of us can understand and make provision for their very real needs.
Where to Start?
I came across a Facebook entry written by someone who was aware and anxious for a deafblind man and wanted to know more an be helpful to him.
I’ve got a question and I hope you can help me. There is a man in my local area who I have seen walking with a cane, who frequently has some difficulty crossing our road (it’s fairly busy and there are lots of parked cars on both sides). He bumps into parked cars and other obstacles quite frequently, and when I’ve seen him I’ve generally kept an eye on him from a distance to make sure he’s not getting into danger. I have never seen him with a service animal. The other day I saw he was trying to cross the road but was having difficulty locating a space to do so, so I went over to offer help. He was unable to locate me by sight and when I touched his arm to indicate my presence he said “deaf” and he wasn’t able to orient himself to my location, either by sight or sound. I can only assume that he is completely (or near enough completely) without sight and hearing. At that point I wasn’t able to communicate further in order to offer help, and I wasn’t sure how to proceed, so I left him about his business and just kept an eye out to make sure he was safe.
I have been thinking about this incident a lot and have done a bit of research on deafblind communication, but it appears that there is no “standard” communications method, and many of the more common methods involve holding the person’s hand, which feels inappropriate and potentially frightening in the context of being approached by a stranger on the street, even with the best of intentions. I am also aware that unsolicited offers of help from able people, particularly strangers, can be unwanted and frustrating even without the communications barrier.
I’m feeling a bit ignorant and useless here. Do you have any suggestions on how I should proceed? I of course want to respect his independence, and fully understand that the best thing might just be to leave him be and continue keeping an eye out for his safety without interfering. But, equally, if I can find a way to communicate in a rudimentary way, and help him cross the road when he is struggling, then I would be more than happy to.’
At least three of us deafblind people responded on Facebook and, in my case, his observations have lingered in my mind and kindled a desire in me to write this book. So here is my response:
First, a big thanks for looking out for someone like me. Keep doing that and, if everyone did the same, I and others would be safe and able to go out of my home and have a life, difficult as it is.
Second, very few people are completely without sight, hearing and some intelligence. So tap on my upper arm a couple of times and stay close. I may appear still or un-responding while I am weighing up the situation. I won’t see your face or hand movements but if you speak slowly and distinctly with just a few key words, we might make progress together and the chances are I will be damn glad of your help and friendship. ‘Help you’ would do for a start.
If I have had a bad day and appear grumpy or resentful, please just keep looking out for me and, when you meet the next deafblind person, start all over again and forget the bad experience with me. We deafblind people have all the usual upsets and problems in life as well as our deafblindness.‘
Getting used to poor hearing and poor seeing is not as straightforward as might be imagined. As in many human new situations, time is needed to get used to the new. The reality of the new is not what one might expect. Hearing less is not just a matter of amplifying sounds, spending time with the hearing specialist and seeing less is not just a matter of magnifying what is there to be seen. So when facing significant hearing or sight loss, most of us seem to go through various stages of acceptance and getting on with things or rejection and even head in the sand behaviours.
Stage one involves gradually beginning to realise there is a problem but not yet being ready to confront it and have it investigated and hopefully sorted. In my own case I have long being partly blind but when deafness became a reality I was very slow to seek help and lived in a state of embarrassment and avoiding situations where it mattered.
Stage two is about seeing experts and getting advice and often receiving a hearing aid or one or two solutions to compensate for the sight loss. Here we are most vulnerable to the sales pitch. A bright image with large letters on a screen can seem like the magic cure we yearned for. The tiny aid in the ear seems to make the audiologist@ voice in the clinic so clear and just like the old days.
Stage three is back at home or work where things are by no means so straightforward. It used to be so easy to see and hear and was just taken for granted. Now the whole business is very tiring, requiring massive concentration and making it hard to keep the mind on the job. The brain is so wonderful at sorting and balancing sounds but the hearing aid is an absolute pain in the bum in a noisy environment where lots of people are speaking. It gets worse because what we were used to as familiar sounds now sound different and its all out of proportion. Not surprisingly, many far too soon leave the hearing aid in the draw and continue to be a new sense to partners and are viewed sometimes as uncooperative or set in their ways. There is a similar story with sight loss and proscribed solutions. The days of glancing at anything are gone and it’s a question of concentrating on things to be seen. Reading a age now becomes seeing a few letters at a time and patiently building up the word, the sentence and the page at a high mental cost. Over the years, I struggled with flickering magnification on a screen until, to avoid my head busting at work, I resolved to move to speaking systems so I could sit back, listen and learn.
If you want to stay sane, the trick is to not give up in stage three and guide yourself to glide into stage four. Far easier said than done and many of us take years or possibly never get there.
So what is stage four? There is no easy definition because it represents differing behaviours and experiences for each of us as individuals. In a sense stage four is a kind of acceptance of the new situation, a realisation that the old stuff has gone and that, with a smile and a good humour, the new way has a future. It shows itself in a ready willingness to tell people you did not hear or you can’t see who they are and all without embarrassment. Its about suddenly realising after all the struggles that you are actually enjoying a book like you used to but you are reading it more slowly, listening to it or even reading it with your fingers. Its about going out with mates or family and not minding you can’t see all that others see or not hearing all that others hear and perhaps getting the grandchildren to describe something to you.
Of course, acceptance never means giving up. If a new solution, an operation or some technology comes along, give it a go and spend some savings if the risk factor is reasonable. And there is one final thing: Far from being embarrassed, as during stage one, we learn to enjoy the compliments and praise that comes with stage 4. Many people without sight and hearing challenges rightly admire stage four success when they come across it. You can think of stage four as the triumph of ability, against the odds, over disabilities. I am qualified by experience to write about the grief of losing sight and hearing. I grew up with sight loss and my hearing has always been a bit suspect. I can only admire those who suddenly lose their senses significantly in later life and have to make massive adjustments to their lives, emotions and how they come to feel about
I get to hear less and less of the news. But there is an item that is dear to my heart. I hear the name George ‘foi’’ a lot and understand this man is black and was murdered on camera by a white policeman. I don’t hear His last name but feel for him, HIS FAMILY and the many others in the world who are badly treated and not understood. I imagine him pinned down and gasping ’not able to breathe’ even though I miss the detail of each broadcast and can’t see the words on TV.
If only we could find the way to help all men and women to value others as we would like to be valued ourselves, whether black, gay, deafblind or, as we all are, just human beings.
Recently on the radio, I heard the voice of Helen Keller, the most famous and influential deafblind person ever. I was filled with emotion and admiration all over again.
One of the fears some of us have is that we will acquire a deaf persons’ voice and feel embarrassed about it. Apparently, Helen Keller herself once said publicly that, if she had a normal voice, how much more she would have been able to achieve for the deafblind cause.
Sorry Helen Keller, you were totally wrong. It is your special individual voice impact that has changed the world for us deafblind. OK so great to make constant efforts to speaking as well and clearly as possible as indeed Helen di with the help of her teacher; but embarrassment or shame about the voice, no way ever.
It’s often forgotten that people with poor hearing or poor sight are actually highly skilled at making the best of both senses. Such expertise is not needed by those with so called normal hearing and seeing.
Deafblind pride, say I.
I often wonder why some people just like me, hold back and others just can’t keep out of the limelight. So I have been thinking about some of the things that might hold us back which could be related to our seeing and hearing challenges. Of course, we know we should not be holding back. We should aim to join in everything and always play our part.
NOT KNOWING WHO IS WHO: Who we are talking to.
MIS-HEARING WORDS: The embarrassment of using the wrong word.
NOT KNOWING WHEN it IS OUR TURN TO SPEAK: In meetings, shopping.
Partly hearing the conversation: joining in when the topic has moved on, getting the wrong end of the stick.
Being a poor speller: When writing, avoiding words you can’t spell.
Just can’t be bothered: After many failures or embarrassment– Just not worth getting hurt agai
This story explains a good deal about how people with low vision see the world.
A friend returned to his old school and entered what used to be the common room. He saw the piano in the far right corner and made straight for it; but it was gone.
So how come a piano can vanish in the twinkling of an eye? My friend was seeing the commonroom via a memory, the mental image of the room which remained stored in his brain. His current weak vision failed to reveal the missing piano to his eyes.
In other words, we who have weak vision depend on our brains to complete the visual picture we see and its great. Unfortunately the reality spells a danger not known to our brain and that’s when we get into trouble. That’s why we sometimes appear to actually see quite well while other times we appear pretty well blind.
It’s the brain that does It stupid!!!
It occurs to me that people with normal seeing and hearing abilities may not fully understand the power of the smartphone, the computer and, in particular, the power of the screen. Like many in my position with poor sight and hearing, I know far more of what is going on looking at a screen than I do, as often as not, face to face and in a crowd or meeting. Let’s try to understand how this works and maybe the understanding will help guide newbies to sensory disabilities to overcome their initial puzzlement and learn to get the best out of appropriate technologies.
What is it about the screen? Why can I see more of my daughter’s face on screen than when she is across the dinner table from me? Why can I read headlines on screen but not when I hold up a newspaper?
Face to face images depend on reflected light -second best and the lighting circumstances vary greatly and are normally not within one’s control The smartphone or computer screen is made of thousands of tiny but potentially powerful little lights called pixels. The colour, the intensity and the size of the bits that make up the image can all be controlled to meet the needs of variously damaged eyes. Its as if the screen is alive, electrified and vibrant to weak eyes while the real world can appear dull to some of us.
Another way of thinking about all this is to understand that damaged eyes are a bit like a damaged camera and the cameras on modern phones are fantastic. So while my wabbly slow functioning eyes struggle to see whether her face has glasses or lipstick, the digital camera sorts it all out and, with my nose close to the screen in my case, I get it, well much more of it. On a zoom call, I might even get to be able to recognise the face which is talking and I never recognise a face when out and about.
I guess the message is clear. Encourage grandma to try something new digital because, when she has got over the first uncomfortable experience of something devilishly new and fangled, she might surprise you and herself by seeing more than she bargained for. She might even start reading again or browsing for clothes online.
It’s a great way to get out and about and keep fit but you have to be very alert and realise that you are often significantly unaware of things going on around you.
Your routes are mapped in your head and, even with a bit of useful vision and hearing, the number of clues available to you is limited and often fleeting. a park looks the same apart from a big tree, particular slope in the path, or a building. Likewise streets tend to look the same apart from a brightly coloured house, bus shelter or zebra crossing. Its very easy to get thinking and forget where you are.
Not hearing your dog: Your dog might make a low noise when beginning to be distracted by an approaching dog; it might be chewing something and you don’t hear what is happening. Your dog might be looking at a bird or squirrel instead of concentrating on the job and you don’t see this. It might stop for a good reason, an obstacle, but it might be distracted and you can’t work out the difference. So your response might be inappropriate and lacking understanding what is going on in the dog’s mind.
People and obstacles in your path: I tend to say hello to people in general and when they respond, I know where they are on the path ahead but I never know who they are even if friends or family. But getting precise whereabouts of people and sounds is more and more difficult and my biggest worry is trampling on little children and yappy dogs ahead underfoot.
The weather: Although my hearing aids are wonderful. The wind is a dangerous sounds distraction especially crossing roads. I have walked in front of an almost silent electric car coming out of a side road and I rarely hear cars coming into the side road I am crossing from behind me which is potentially dangerous. Bikes and e-scooters are a nightmare and they come close and fast. Icy roads are a huge safety hazard if you have a strong dog.
On the good side, I love night walks which I have never been able to relax and enjoy before having a guide dog.
The dog as an icebreaker: Since having a guide dog, I find myself chatting to far more people out and about and there is a certain dignity with a fine dog which you don’t get to feel with a long cane. I can walk far quicker and with more confidence than was possible for years in the park and around town and recently staying in a large and challenging hotel was a breeze compared to the old days. I was shown to my 17th floor room amongst the maze just once and, ever afterwards, I was always taken right to my door from the lift with a furry trusted creature poised under the handle of the correct door to my room.
Dog training experience: on my course, 2 of the 6 trainees had poor hearing as well as sight loss and the staff are very able and understanding as dual sensory loss trainees are the norm, it seems. It goes without saying that, for dog lovers, the guide dog brings regular joy and companionship especially where lives could be isolated and lonely.
\\DON’TFORGET THE HEADPHONES
For those of us lucky enough to benefit, modern hearing aids are wonderful but perhaps the sounds we hear are not nearly as good as what we remember from the good old days of big hi-fi speakers and lots of base to our music. So, while being laid up with a broken ankle and not able to walk out and about, I dug out my old headphones and found myself listening to music the old way, the full range of frequencies and the pop songs of the fifties and sixties just like it used to be. The volume was probably too high for safety so I did not listen too long.
Audiologists are the professionals who sort our hearing aids for us but I have never heard them mention headphones. Hearing aids are sophisticated and cost lots of money and need maintaining; A decent pair of headphones can cost as little as thirty pounds from a local store and they don’t need maintaining.
There are several options: Tiny ones, like those that come with your smartphone, nestle in the ears; some have an overhead band and either cover the whole ear or part of it. Others are known as bone conduction headphones and the band sits around the back of your neck with the sound pressing against the bones in front of your ears. There are even sun glasses with small speakers inserted into the glasses frames which are wireless.
So, give it a go and try some headphones and you never know, you might really enjoy the sound of things you have not heard properly for years. But don’t bother to break your ankle. That is a very silly thing to do.