Life Unseen by Susan Mellsopp
A unique tale of amusing and not so amusing stories of the nearly blind
“You don’t look blind” is the statement many of us who are vision impaired hear repeatedly and frequently now chuckle at. “How do you think I should look” is my usual response. Perhaps we who are blind or vision impaired should appear poor, malnourished, and wear tatty clothes. Possibly looking completely lost, bumping into things, or be disorientated in a shop or building is expected. Purple hair, hippy clothing and leather sandals might be more appropriate attire for those lacking a sensory essential. Hanging onto someone’s arm and going nowhere alone might be the life of the visually afflicted. As for the fact I wear glasses, not something a person with poor sight should do. Poppycock!
People usually scarper looking rather embarrassed when responding to their slowly worded comments that actually yes, I am severely visually challenged, but not stupid. Those voicing this opinion have no idea how offensive it is. A friend has two false eyes. She got so fed up with these statements one day she took one of her eyes out to show a disbelieving person she really has no sight. They hastily departed.
Some people wave from their patios, through car windows, or from the other side of the road expecting a response. They probably assume I am a snob because they don’t get a reply to their friendly gestures. Because occasionally their well-known outline is visible, depending on the light and time of day, and a response is offered, they assume I am a fraud. Others toot or wave at me to cross pedestrian crossings. Unaware we are trained to listen to cars idling, inclining my arm in the direction of where the car is and crossing hastily I hope another vehicle does not bowl up the side of the halted chariot and knock both my guide dog and I into oblivion.
Recently, having spent extended time and money at my private ophthalmologist due to developing glaucoma on top of my other eye deficiencies, one technician was so enamored with Maya, my guide dog, she decided we could stay the night with her. Explaining about a screen we could watch movies on, order in Uber eats, and enjoy the luxury of the facilities at the clinic, the temptation was great. She even found us a comfortable place to sleep. Having supported their recent overseas jaunts to conferences – and been the subject of queries at one, luxurious cars and children’s private school fees, expressing the desire to receive an invitation to attend their Christmas party was received with a very strange look. It’s is the least they can do for a patient who has graced their bank accounts with over twenty-five visits and expensive surgery this year.
Sent an email and text before a procedure explaining I must bring a driver for the visit, and one the following day for the check-up, I burst out laughing. Deciding to reply to the email explaining to the receptionist that Maya didn’t think I should be driving, she couldn’t offer, and a relative would be my chauffeur, it was received with good humour. For all follow up appointments I make a point of introducing Colleen to my driver for the day. She is probably convinced the teasing about her faux pas will never stop. My guilt at being cheeky kept me awake one night so at the next visit she received a bunch of spring flowers from my garden to enjoy.
Even in this day and age, the public appear to think blind and vision impaired people are uneducated and helpless. While you may well gasp at this statement if you are not one of these ignoramuses, it does happen frequently. Someone in a supermarket once asked why I was shopping on my own and where was my full-time caregiver who could buy my groceries for me. My response was probably rather sour and distant. I couldn’t imagine anything worse. Living alone is great. Women with a caregiving nature, often working in this field, patronise me to the point violence is a possibility. Those of us, but not all, in the ‘blind’ community are often incredibly independent. We cook for ourselves, travel on public transport and can certainly do daily household tasks. A depressing vision of a caregiver helping me shower makes me shudder. Probably throwing the shampoo and body wash at them in a temper tantrum to end all temper tantrums would be the response.
This can be followed by meeting the caregiving personality when out enjoying myself, frequently alone. Having a quiet hot chocolate and forbidden chocolate éclair, clothes shopping, or even perusing a white-wear shop, they appear from behind counters and shelves. Their trait comes to the fore when they ask if I am lost, need help, or on occasion sit down and try to find out all the personal information about my tragic disability. Strangers have an odd way of treating the blind, often assuming they are so lonely their own insipid conversation is exciting to us. Trying to shake these people off can be very difficult, some deciding they want to be lifelong friends and cling like limpets for months. Coincidentally they are so out of date with disability and its language they persist in calling me ‘handicapped’. This ancient word makes me shudder, placing me in a position of nothingness. When someone of these ilk glues themselves tightly to me I tend to explain their perceptions are wrong, I am extremely ‘able’, and have an interesting and valuable lifestyle. Discussing the contrast between their ignorance of the blind lifestyle and explaining I am very well educated, write extensively and read voraciously automatically brings the question, “but how do you read” with a disbelieving look on their countenance.
When purchasing a new phone three years ago my driving license was requested as identification. Standing there with my guide dog, and having explained the need for help to set up my new phone due to my visual impairment, the chap seemed blind to my poor vision. Trudging home in humid 30 degree heat to get my passport, my temper was accelerating rapidly. It was not a positive experience. Last week accompanying my disabled daughter to try and solve some anomalies in her phone account, my password was requested. Not able to remember it, although it was not my account we were concerned about, the young woman asked for my driver’s license. Looking down at my gorgeous guide dog I said “really?” “I didn’t want to make assumptions” was her response. So, unbeknown to her, after the last episode at the same shop, I had ferreted out my old long expired license and put it in my wallet. Showing it to her, plus my photo identification as a member of Blind Low Vision, and my Total Mobility card, to my utter disbelief she accepted my two-decade old license as my identification. Makes me wonder if I could hire a rental car or take an Audi or Mercedes for a test drive. That would be exciting.
Religious do-gooders are the bane of my life. Leaving the supermarket one day, alone of course, an older couple came up asking if they could pray for me. Unable to escape as they virtually backed me against a wall as people streamed past, they did not wait for my response. These religious cronies put their hands on my head and prayed very loudly for me to be healed of whatever sin had caused my damaged eyes. Poking my tongue out at them as they departed was a very tempting response. I wish someone could explain why church goers assume having sight issues is a negative experience. Most of us embrace our eye difficulties and in no way believe losing sight is a punishment from a God for something we have or have not done in our past. They need to move on to those more accepting of their ministrations.
When going out with a friend for a posh lunch at an expensive café she always books a table and insists on informing them that we will be accompanied by a guide dog. While this is definitely not necessary, it has avoided some awkward confrontations. After an appointment and in a hurry to get to the next one, we queued at a busy lunch bar. When reaching the counter the girl told me my dog could not come inside as she did not have a cover on. With my hackles rising and taking a deep breath I politely explained she was a working guide dog, had a harness, and only wore a cover when it rained. The girl was not convinced and went to see her employer. Showing her my guide dog ID card and explaining the access law the girl eventually conceded. My friend and I sat down, both feeling that my poor vision and need for a dog silenced me in similar situations.
People often assume we can still see them, or simply forget that a white cane or guide dog signifies the handler is blind or visually impaired. Today some people seem unaware of the reason for a guide dog or cane, or perhaps don’t even know what they are. Yes, I have met people, surprisingly often older, who know nothing about guide dogs for the blind. After an explanation then the usual question is “are you training the dog.” They seem surprised guide dogs actually work with a handler. Often asked why I have a dog given I still have some sight in one eye, the temptation to say I just needed a trained attractive canine companion to have fun with is at the forefront of my mind. Or perhaps I deserved a very expensive well-trained dog to be my blind date. We all have to provide an ophthalmologist report stating our level of vision before we can be considered as a guide dog handler. Having a copious number of falls, walking into glass walls, and struggling to navigate busy places made me eligible, as did a rare retinal detachment. Living in fear of falling down stairs petrified me. Receiving my first dog was life changing, it was like being given a Rolls Royce.
Cane training has to take immediate precedence, this can be fun once the initial embarrassment has dissipated. Learning to walk past the front entrance of shops in malls and finding people busy on their phones I asked if I was meant to go around them. “Absolutely not” said the O & M instructor, just hit them with your cane. That was hilarious, though the responses often were not. Later, when training in the local mall with my first guide, she was unable to pass someone busy texting on their phone and walking increasingly slower. Eventually the person stopped right in front of us and we bumped into them. Turning around he cuttingly commented “what, are you blind.” Apparently he was rather shamefaced, mumbled a hasty “sorry” and moved aside.
Cane use when travelling overseas has provided me with some great moments. Canes in New Zealand have a red reflective strip part way up for night use. Bemused as to why on my first visit to Britain people always either ignored me or shouted loudly, discovering this red strip signified that users were both blind and deaf in the old country explained what had seemed like rudeness. It may have stopped me being accosted by lots of odd bods, but prevented me meeting some really interesting people, possibly even aristocracy! Swinging it around and tapping from left to right as we are trained to do was impossible in busy locations. Advised not to travel on the London underground at peak travel times, this sounded like an amazing experience. The carriages were packed tight, and when the train arrived at the station nearest central London it seemed as though the equivalent to half the population of New Zealand exited at the same time as me. Unable to keep up with the millions ascending the steps, I flattened myself and my trusty cane against the wall and waited. Still chuckling about this experience almost two decades later, it was really rather wonderful.
Travelling with a white cane has provided me with other fabulous and funny experiences. Visting the grave of that famous statesman Winston Churchill, an older man approached me. “Have you walked over the Pennines to get here” he questioned. Confused at first, then explaining it was a white cane for the blind, he slithered off, obviously embarrassed. Perhaps he had hoped for a chat with a fellow long-distance hiker. Visiting the catacombs in Paris and standing next to a young couple, we stared at the resting place of Louis Braille. Turning to me the young chap asked if I knew who Braille was and explained he had invented a way of reading for the blind. I lifted up my cane to show him I was one of the so afflicted. The couple slunk off probably aware their power of observation was sadly lacking.
Acquaintances and friends of friends often express huge surprise at my solo travel. I am sure going anywhere with me would be exasperating for fellow travellers due to my early starts at exploring and not stopping all day. “What do you see, why is it worth travelling overseas, I assume you always go on a guided tour, what’s the point” are comments regularly received. The look of incredulity on my face I hope shames them into realising how they view me as disabled and incapable. Of course there have been frustrating and annoying experiences such as getting lost, being unable to find a ladies toilet and once ending up staying in a room in the red-light district of a large English city. I cannot figure out why people think someone with a sight impairment cannot travel the world alone, stay safe, and have incredible experiences.
Twice reading and being impressed by the adventures and account of the travels of totally blind Englishman James Holman, it is a book I recommend to the skeptical. He circumnavigated the world in the late 1700s and early 1800’s. James had been a lieutenant in the British navy before losing his sight completely. This allowed him to hitchhike a ride on any British navy ships he found in ports of the countries he was exploring. The book, A Sense of the World, is a wonderful read of the times when travelling for pleasure was still to be invented.
When asked how I travel I rather blandly say “just the same as everyone else.” I do book assistance in airports to get me through the maze of barely discernable shops and thousands of grumpy travellers, but that is my only concession. Travel has provided me with a few undesirable experiences. I have been robbed once, in Copenhagen, where I was also felt all over by an over-zealous male customs officer. Apparently concerned that a group of blind and vision impaired delegates to a conference in Finland might be carrying drugs from our stop- over in Bangkok, we were targeted. I still cringe at this unsavory experience. Often watched by suspicious people when taking money from an ATM machine, in France I was accosted several times by people with a ring claiming I had dropped it nearby. My cane once scored me an upgrade with Qantas, and surprised a stuffy air hostess who tried to snatch it off me until I showed her that it would fold up.
Mundane pastimes also bring exclamations of disbelief. Queried how I manage to prune and care for the copious number of roses in my garden, I nonchalantly express surprise that this question would even be asked. If its mid-winter hiding all the bruises, puncture wounds, and scratched arms and legs which are the result of my preparing the roses for their late spring flowering is a necessity. Putting my nose on the branches to the find the nodule for the new growth and to carefully cut off the old wood must look odd.
Other gardening experiences provide frustration and anger. Accidentally pulling out spring bulbs just putting their heads above the cold soil, digging up tiny cuttings from friends, or dahlias pruned down to their base are unwitting victims. Pulling out granny’s bonnets and other sweet annuals which have seeded for a wonderful summer display is sad and they are mourned. My language spreads to the neighbours who fortunately turn a blind eye and a deaf ear. Last autumn purchasing a rhododendron called ‘Susan’, it has been difficult not to knock a branch off it when nearby. As it was bought with a gift voucher from a 100-year-old friend my guilt knows no bounds. Yes, gardening is not easy when one’s eyes do not cooperate.
Expressions on people’s faces when explaining what I spend the majority of my day doing can be priceless. “How do you do that” is the common stuttered response when gleefully explaining my methodologies. “Writing, really, do you write by hand?” My using a computer, and having done so since they became available for home consumption decades ago, seems to be a mystery to onlookers. My love of technology; computers, tablets and mobile phones is exposed frequently by disbelieving questioners. Why people assume that those with sight problems cannot use technology seems strange. It is our main method of communication, gaining education, reading, learning about the world, meeting and contacting people. Your computer, phone and iPad talk is a statement also received with some disbelief. The fact every piece of modern technology actually has this ability is obviously very strange to sightlings. What increasingly amuses me is the ‘normal’ people who are so scared of modern technology they have none, criticise it, and have no idea how to use a quality mobile phone, Alexa, or how to google for information using just their voice. Their reluctance puts them so far behind the sight impaired its actually quite sad.
As for the fact I knit children’s jerseys for charity, eyes bulge and ears waggle in anticipation of how this is possible. “Just the same as you knit” is my reply, hoping to educate others listening in to this fascinating conversation. “But”…they stammer, “it sounds impossible, how do you read the pattern, count stitches, know when you have made a mistake or dropped a stitch?” Tapping the side of my nose I cheekily say “that is for me to know and you to find out.” They have obviously never heard of photocopiers which enlarge print, asking people to read a pattern onto a device, downloading a pattern onto an iPad and then using Voice Over to read it, or simply learning it off by heart. There is always a way. A friend with no sight knits lacy patterns, complicated jerseys for her partner, and uses oral patterns. She seldom makes a mistake.
As for music – regularly attending concerts at my local university, travelling by bus and walking quite a distance through to the performing arts centre, I have been asked how do I manage that. Surprise has been expressed at my wish to attend a concert by myself, but Maya my guide dog comes too. She knows the way, even after almost two years break due to both covid lockdowns and ill health. Perhaps they have concluded I am also deaf, intellectually impaired, or not erudite enough to appreciate the beauty of an opera singer, cellist or internationally recognised pianist. Trying to teach my dog that when people clap it is actually not time to leave, to wait for all the loud clapping at the end, is difficult. There are often lots of chuckles from the uninitiated as they watch Maya rise to the occasion after every piece and her obvious appreciation of classical music.
Having always loved music, I purchased a keyboard in the hope of revitalising my teenage playing up to Grade 6. Reading the music is now very difficult, despite it being enlarged. Still aware of where all the keys are, all the flats and sharps, my sight makes it difficult to put it all together. Progress is slow, yet it is a wonderful way to enhance my daily existence. It might be time to find a teacher though. Purchasing a rather expensive set of Sonos speakers, the sighted, rudely as usual, asked how I could afford them. In fact, another vision impaired person even queried if I had a “money tree”. “Well, not having to run a car, buy petrol, pay for registration, tyres, batteries and repairs helps” I answered. I have also worked since I was 13, starting during school holidays and weekends, so do have some savings. Somehow they don’t seem to believe me as I turn up the speaker and play opera really loudly.
Now for cooking. Why do people assume this is not possible for those lacking sight. As the comment “you can open a can?” still reverberates in my brain from almost 20 years ago, there seems to be a huge misunderstanding about the ability of a blind person to navigate a kitchen. We do need to eat, despite sometimes being questioned in the supermarket by people who don’t want a dog in there or who think fresh air is a suitable diet. Shelves full of cookbooks fill a wall in my kitchen, and experimenting with food is fun. An app on my phone reads the recipes to me. Despite being on two different diets for separate health issues, I have learnt to make it work well. Using an oven is simple, believe it or not, as is baking a cake. Having a plethora of kitchen gadgets including a large cake mixer, air fryer, bread machine and crockpot helps. I seldom eat takeaways, perhaps once every six months. Have I ever made a mistake – absolutely – but decades of cooking for a farm family and now myself mean those who assume I might burn the house down just by turning on an element need to take a good look at themselves. Ideas can be gleaned from lunches in lovely cafes and tried at home. I don’t burn food, nor do I drop casserole dishes. The crockpot is a god send; freezing meals cooked in it is my version of a quick takeaway. I did once lose a roast chicken dinner after tripping over my guide dog. She thoroughly enjoyed the meat, but was not as fond of the broccoli and pumpkin. It was probably my fault, I don’t turn lights on at night, what’s the point!
The general public seem to have a fear of the blind and vision impaired. I doubt we jump out and frighten passersby, nor do we do strange things in public. Yes, we can shower ourselves, use the toilet independently, and wow, we can even dress nicely. Explaining that there are far worse lifestyles than that of the blind, those listening to me frequently do not hear. I would hate to have locked in syndrome, and not being able to read and enjoy music would definitely make me consider being put down. What is it that the public is scared of? While there is definitely no competition between impairments, I meet people who see themselves as completely normal yet live a far more restricted life than I do.
Blind people have a wide variety of hobbies, work in many occupations, graduate with advanced degrees, speak more than one language, and often own their own home. Reliance on any government handouts is anathema to most of us. We travel widely, have relationships, children, get divorced, and enjoy the same experiences as everyone else. And guess what, we also go to the movies and the theatre. Maya loves finding the popcorn other movie goers have dropped.
Yet it is the simple things which trip us up. Scooters left on footpaths by the sighted, cars and vans parked there and crossing signal indicators for the blind which don’t work. Inconsiderate receptionists who ask us to fill in forms and when we say we can’t see it they ask incredibly personal questions in a loud voice in front of others. Buses we cannot see failing to stop to check if we want to catch it, and taxi drivers who assume we know the car which has just stopped is a taxi and not a private vehicle are infuriating. Taxis which drive off when they see us with a guide dog thus leaving passengers standing outside in all weathers is difficult.
One day a rather alternative, late middle-aged woman, asked me what I would do if by some miracle my sight was restored. I was floored, it was not a situation I had considered. Excusing myself, repairing to my home and mulling over her question for several days, I returned to the place where she was staying. Explaining her query had confused and moved me deeply as I had always had sight problems, so considered this was my identity which had expanded and grown over the years. The thought my guide dog could be taken off me if I suddenly achieved 20/20 vision appalled me, but I was genuinely curious and considered her question over the following months. Despite the promises of the fundamental prayer givers, and a hopeful childhood optometrist, I had never had any improvement in my sight. Asking the question of other people of my acquaintance with a variety of eye conditions, all were as interested as me in the thought, some were amused. Blind identity is a tenuous description of how we all reacted, but it underpinned our essential being and thought processes. Being vision impaired was now my life, one accepted with equanimity. After all, it had given me some level of kudos with my solo overseas travels, career, and visible joy in life. Without being ‘disabled’ I would never have met the amazing people who have filled my life over the last twenty years, particularly those who treat me as an equal and normal individual. Ophthalmologists, optometrists, researchers, friends, work colleagues and others do not abide by nor understand the reaction of the general public.
So, if you meet a person with a visual impairment don’t ignore them, just ask their dog’s name or age, and then sidle off so we are not talking to thin air. Instead ask their name, where they live, what they do, and delve into an interesting lifestyle you may never have considered. Of course, you could be led up the garden path with humour and a cheeky response. Often telling people when queried if my dog will bite I say no, but I do. Don’t be the person, who, when asked for directions, bent down and explained to the guide dog where to go. Blindness is not a disaster unless someone chooses to make it so. Several months ago I had eye surgery which could have caused me to lose all my remaining sight. While naturally concerned, planning for this eventuality made me view it as offering a new challenge. While grateful this side effect did not happen, it is possible I could wake up one day with very little useable sight. This will not make me a different person. My wonderful lifestyle will continue, my sense of fun, and guide dogs like Maya will keep me safe. Perhaps I will no longer be on the list to test a self-driving car, and any hope of obtaining my pilot’s licence in my mid-seventies will be in abeyance. I will smile, greet people exactly the same, even those who think I am fully sighted, and enjoy the look on their faces when Maya appears from under the restaurant table.