BLINDLY BLUNDERING ON…

The happy people, including myself, will tell you that when it’s impossible to change your circumstances, change how you react to them… Full disclosure, sometimes… No most of the time… all you can do is laugh!

As a blind person, everything in my life happens just a little bit slower than what you are probably used to. I have a mini tantrum every time someone moves things around in my house, not because I’m pedantic, but because it will most likely take me 20 minutes of feeling around with my hands, bumping things off table tops and generally just creating more chaos, before I locate it, 20 centimetres  from its usual place. The more irritated I get, the longer it takes me to find that object, well hidden in plain sight… and the truth is that I don’t need others to bring disaster to my life, I am completely capable of managing that, perfectly on my own.

It is no secret that I’m not a morning person. I normally get up long before I’m actually awake and my first cup of coffee is the most important part of my day. What you don’t know is that I also hate the smell of milk, so more than once, I have opened the fridge, grabbed like what felt like the milk bottle and ended up with peach flavoured Tropica in my cup of life… and friends, that’s how I know that peach coffee will never be a thing!

I have no idea how toothpaste always manages to be everywhere but on the actual toothbrush, I suppose I touch it when I put it on and then because you need to scrub your fingers for about 10 minutes before it’s washed off, [which I never do…] is how 20 years after being a toddler, I still go out in public with toothpaste in my hair, on my nose and on my clothes… Why does no one believe you when you explain that it’s just toothpaste???

At least I know I’m not the only one, in conversations with other blind people, eventually we get around to what we refer to as the blind moments and I finally feel better about wearing one green and one red sock when they tell me about the time Shower jell was mistaken for body lotion or spray-paint for insect repellent… and while I have never accidentally sprayed streaks of red or yellow paint all over my kitchen, I have put sugar into dishes that required salt and my boyfriend once put xylitol in his coffee instead of ordinary sugar… If you are not aware of the side effects of xylitol, now is the time to google it, before you make that mistake… unless of course you want a sick day!

While I was a student, I walked into so many classes where I most certainly did not belong and when you have a guide dog or even a cane, there’s just no way of quietly slipping out… Oh no, you are always stopped, asked if you need help, and explaining your mistake just never gets less awkward and years after, you still find people asking you if you manage to find your way around campus now…

You might think that nothing can be worse than public humiliation, which might be true, but things can always get a whole lot wetter! Last year I moved into a block of flats and where I take my dog for a busy, is a swimming pool… You have to walk on the side of it to get around it and so confidently, wearing a bright yellow t-shirt, I made my way to the grass, I tripped over a plant I wasn’t aware of and apart from going for my first swim for the season, I also had to do the walk of “nobody has to wonder what had happened” all the way to the top floor where I live.

I live through plenty of these moments in a day, I’ve addressed a woman as sir and had long conversations with mannequins and all I have learnt from all these experiences is how to laugh at myself and to move on. You can’t learn from these situations, because you are bound to step into the same traps more times than you can count. It is simply a part of living with blindness and it clearly happens to all of us so you are most definitely not alone.

A TALe OF TRUE STORIES

When I complained about having to do the dishes when I was young, my mom would tell me to put a smile on my face because dishes is only the first of things I will have to do in my life that I won’t like and it’s always best to approach these things with a positive attitude… Now like all moms, she is infinitely wise, but in this instance, she should also have told me to wear my armor, take a shot of something potent, phone a friend and draw up an escape plan with at least ten easy exits, in addition to this chirpy attitude before I face any of the unpleasant situations blind people occasionally get stuck in. The truly disturbing thing about all this, is that before I sign up for any of the things that make me uncomfortable, I ask myself “why are you doing this again? Don’t you remember what happened last time?” but the mind is a powerful thing and it convinces me that it wasn’t as bad as I remember and then the kicker… Wait for it… “THIS TIME WILL BE DIFFERENT!” Spoiler alert, if anyone [the voice in your own head and present company included] ever tells you that it will be different, well… RUN FOREST RUN!!!
So before you write me off as an overly dramatic lunatic, let me take you on a journey of horrors and you can decide if Frankenstein is real or if I was just blowing smoke up your “chimney”.
I hardly ever feel blind, yes I do know that I really sound crazy now, but it’s true… I am quite good at finding my way around and doing things for myself with relative ease… and then I walked into a communal kitchen… “Hello darkness my old friend.” People stop what they’re doing and stare at me. The silence is deafening, but I can hear their minds working. “will she burn herself? Is she going to find the milk? Can she make coffee?” And then it’s like the spell is broken with someone very loudly and painfully slowly asking me if they should do it for me. Clapping my hands over my ears and in my most dramatic whisper, I very quickly inform them that I can do it thanks. Unfortunately the jinx has been activated, all the staring makes me nervous and suddenly I trip over my feet, I pore too much hot water into the cup, I burn my finger and revert to only speaking in profanities and as I leave the kitchen with the elixir of life clutched in my hand, I trip over someone’s feet and as the coffee flies out the mug in every direction, I promise myself for the thousandth time that next time I will turn around and make due without that stupid drink!
Oh how we all love an all you can eat buffet. All those dishes artfully placed on a very long table, a stack of precariously balanced plates on the one end and cutlery… wait where the bleep is the cutlery? Well perhaps this is one of those “back to basics” occasions and we are expected to put our fingers to good use… Or the more likely explanation, someone placed them behind the food. So after almost bumping all the plates off the table while trying to find the back of the line, fortuitus as I at least found a plate, I start moving to the front with all the others. Question: “how am I supposed to know what’s what here?” Do I just start lifting lids, take a whiff, perhaps stick a finger in it, just to be sure and if all else fails lick that finger? Finally someone takes pity on me and agrees to help, stutteringly and in a soft squeaky voice Neville Longbottom starts telling me about all the different offerings available, but just as we are about to get to the good stuff [I hope] someone calls mister Longbottom and forgetting that he was helping me, he grabs his plate and disappears. As the line clears and everyone sits down to eat, Neville suddenly remembers that he was trying his hand at being the worst good Samaritan ever… and pretending that it was the funniest thing, while pelting him with stink bombs in my mind, I finally get what’s left of everything no one else wanted and I sit down to start waging the war on chicken bones and an unidentified delicacy that refuses to bend to the will of my knife wielding dexterity.
Now that almost everyone has been fed, it’s time to move on to the socializing part of this fun time we’re all having. Not to be outdone again, Nevil grabs my hand, drags me outside where terrible music loudly entertains all the half-drunk attendees, slams a chare into the back of my knees and plonks a drink I didn’t ask for and probably won’t like, into my hand. I say thanks, but he is already gone. After what feels like two hours, but was probably 30 minutes or so, I sit with an empty glass and a desperate need to go to the bathroom, because guess what Nevil, us wallflowers have such needs too… Deciding that nothing can be worse than sitting there in the cold trying not to wet myself, I get up, temporarily pretending that I cannot remember what happened last time I tried this on my own, I start making my way to what I hope will be a bathroom, but by now I’m not picky, I’ll take whatever I can get! [really I’m kidding, it’s my bladder talking, just ignore it]. One minute I’m walking in what I believed was a straight line and the next I’m diving for cover as glass breaks all around me… I mean, you just can’t trust drunk people. Hah! Actually I was the culprit, I walked into the drinks table, I might actually have obliterated it and in my effort to get away from the carnage, I tripped right into a water feature… Sopping wet and back to speaking in my favorite language, which luckily no one heard over the music, Nevil in a final act of bravery shows me where to find the bathroom and as I could finally hear my phone, I used that opportune moment to get an Uber and got the heck out of dodge.
Well All these things have happened to me, perhaps not all at the same event, as it is described here, but you get the idea right?

I CHOOSE THE DARK SIDE

To better understand where I’m coming from, perhaps start here https://wp.me/p9MbFy-s

Do you remember when you were a child how your mom would threaten to leave you right there in the supermarket if you didn’t stop misbehaving right that second? Boy how that sobered you up real quick… Now that you are an adult, perhaps you say this to your children… but have you ever in the middle of an argument with your significant other or besty stopped and informed them that If they don’t cut the crap right now, you will leave them right there? Do you think it will have the desired effect? I mean, you drove but they can just hop on a train or a bus or get an Uber… So in all likelihood they will laugh at you and tell you to go ahead. For me on the other hand, this is merely another form of bullying. If I don’t have my guide dog with me, this is a terrifying yet effective threat because if you leave me there, I will be stuck, I won’t know how to get home, I will panic, I will be angry, but you would have made your point because I need you and you know you have the upper hand.
It’s the most degrading way to treat a blind person, because you will have used my blindness to make me feel like a child who did something naughty. If you think this doesn’t happen, you are wrong, it happens all the time.
This is why I am on team “pro blindness” when it comes to dating. I am fiercely independent, I am terribly opinionated, I want mutual respect and equality in a relationship, far more than I want to be cared for and coddled and most of all, I do not want to be treated like a child. I am not saying that this is bound to happen, only that as with many other blind people, it has happened to me and I can’t live like that.
A relationship should be a safe place, as a blind person, I face so many challenges in my daily life, I get pushed around and I must always be strong and put on a brave face. When I get home, I want to feel like I am valued as a person, that I am loved and respected and that my opinion matters. I want to be with someone that will call me out on my nonsense without making me feel 5 years old. I want someone who says that he believes in me and actually does, I don’t need to be placated or patronized… I want to be with someone who expects me to rise to the occasion. If I say I’ll make supper, he must know better than to take over, when I make coffee, he should ask me to make him a cup too, instead of grabbing the kettle out of my hand.
I want to be an equal in my relationship with the person I chose and who chose me. I am once again not saying that a sighted person won’t do all these things, merely that I am guaranteed these things with a blind person.

I want to watch audio described movies together, without complaints, I would rather read a book than go out and my idea of the perfect date, is not to go to a fancy restaurant and be subjected to 2 hours of public eating and people watching. I do not like crowded places, because I can’t hear when I’m being spoken too and clubs make me feel blind and deaf. If I go on holiday, I need adventure, sightseeing is my idea of a snooze fest and while I’m willing to do this with friends or family, this is not a compromise I can make in a relationship because we have far more days and months and years together and we will go on far more holidays together than I will with friends or family.
I don’t need the person I’m with to replace my parents, I am quite capable of taking care of myself… I therefore can’t be with someone who will forget this and 20 years down the line blame me for making him responsible for me. I did not ask you to do everything for me and I do not want you too either.
I have been blind for as long as I have lived, I know more than anyone how that changes things, it makes life complicated and not everyone is equipped to deal with all the ups and downs presented by being with a disabled person. Life will not always be easy, there are good days and bad days and on the bad days I need to be left alone. I have made peace with my disability a long time ago, but every now and then, I need a minute to come to terms with it all over again. There are times when I will feel hopeless and disillusioned and there will be moments when it will take me an eternity to do something that a sighted person could have done in a second. People will always stare at me, I will always have trouble finding jobs, I will complain about a lack of accessibility and accommodation until your ears bleed and you won’t be able to do a thing about it and more importantly, I will never change, I will never be able to see, this is it! this is me! and while there are many sighted/blind couples out there making it work, we all have to decide for ourselves what we want and what we can live with and then we need to find someone that can be that person for us and while I know that someone with sight might meet all my requirements, it is simply not what I need. It might seem like choosing to be with a blind person will make life harder, but it also makes my life easier because we both know what we are getting into and in this at least, we are equals. It is a support system like no other, we have the same struggles and triumphs we know when to laugh and when to let it go and we encourage each other to be stronger and more determined because there simply isn’t an easy way out for either of us. For me, being with a blind person, is the closest I’ll ever get to feeling normal.

RELATIONSHIPS AND SIGHT

Walking with a cane verses using a guide dog, braille verses audio or whether to befriend or date blind or sighted people are topics that are heavily debated in the blind community. For me, it came down to circumstances. I chose a guide dog and screen readers because it suited my lifestyle better, but the issue of blind verses sighted was a bit more complicated.

The irony of sight, is that although you can see everything, you can choose what to look at, you can blend in and it is in fact possible for others not to notice your presence at all. My anonymity however, disappeared the day I started using a cane and later a guide dog. Being with blind people, is therefore the only time, I don’t feel like I’m constantly being watched, I can trip or bump into something without anyone seeing or caring and it’s nice being able to relax completely in your surroundings, something I don’t do very often with sighted people, because I am afraid I’ll do something that looks weird and everyone will have noticed.

As a blind person, you are constantly explaining yourself. Why do you put your finger in the cup when you make coffee, how do blind people pass objects to one another, why do you walk with your arm/hand in front of your face, how do you know where to go, Why don’t you just leave your bag here… I get it, it’s fascinating, it’s important that those questions are asked and answered and that people are educated, but for the blind person, it can be exhausting. It feels like you are constantly being reminded of your differences and so I spend time with other blind people because they get me without explanation.

It’s a fact that I have more close relationships with other blind people. I don’t think I necessarily made a conscious choice to cultivate these relationships or to prioritise them, I think that it simply started happening as a result of who I am coupled with the realities of my life.

I am not ashamed of my disability, but I do accept that a day in my life, is not the same as for most people… Cups and glasses that break and crack is a common occurrence in my house, messing coffee and sugar on the kitchen counter or floor is definitely not unheard of either. Crawling around on the floor looking for dropped objects with my hands, using my phone to figure out what colour shirt I’m wearing, walking into the coffee table, switching on lights and then forgetting to switch them off for hours or days, these are all normal situations in my life. I furthermore find it hard to keep up with sighted people… It takes me a few seconds to locate the edge of the curb with my foot and figuring out which side of the escalator moves up or down takes a while. I need a minute to figure out where I am once I get out of a car and finding door handles or chairs, takes time and I probably look silly feeling around with my hands, occasionally touching unsuspecting body parts in the process… I usually end up feeling like I’m frustrating the sighted person with me and so I let them take over. I let them guide me and assist me. Every time this happens, I also lose a little part of myself as I trade my beliefs and independence for friendship. I go home wondering if they realised when they befriended me, with just how many strings attached my friendship comes. They start to feel responsible for me, they must always remember to offer their arms, tell me to step up or down, duck my head or step over the cracks or obstacles in front of me. With time, the novelty wears off and it becomes less fun to guide me around and invites to places dwindle down and disappear altogether. It becomes awkward, they feel the need  to justify why we no longer hang out, and I wish they would just stop. They are essentially good people it’s just that apart from my fantastic personality, I have very little to offer because I can’t drive and need to be picked up, then I need to be guided and often I also miss things like facial expressions or those conversations that happen between people’s eyes so all those need to be explained to me.

There are people who eventually stop recognising the differences between us and our relationships become as natural as any relationship I have with a blind person, but it doesn’t always happen over night and because I am a flawed human, I often keep them at arm’s-length, just waiting for the other shoe to drop instead of embracing the friendship they so willingly offer, My only defence that I’ve been hurt before so fool me once and all that…

So where am I on the sighted verses blind debate might you wonder? The answer is, that when it comes to friendships, I have no preference… Sight or the lack thereof, has no bearing on the way someone treats you, the way they make you feel and who you are when you are with them. As long as you are not just a project and the other pe rson is not just a pair of eyes, it shouldn’t matter that you don’t both have the same visual acuity. Dating on the other hand is an entirely different story.

BEAUTY IS IN THE EYE OF THE BEHOLDER

Many moons ago, when I was not yet as comfortable in my own skin as I am today, I was reminded that beauty is in the eye of the beholder. It took a while for me to truly understand the meaning and depth of this phrase. It was so hard to imagine that anyone could look at me and not just see my flaws, because it seemed that whenever I thought of myself, I could only hear the voices of people who reminded me of my imperfections.
Molly Burke, a blind Youtuber, said it best when she explained that the difficulty in describing to a visually impaired person what they look like, is that “I am reading the book and you are watching the movie…” You know what that’s like, you read a book and as the characters are described, you imagine them a certain way, then the movie comes out and most of the time, the picture you formed in your mind, looks much different from what it is on your screen.
I have only ever been told by others what I look like and people don’t often think of the power of their words… Without thinking, they tell you that you have freckles and instead of knowing that they don’t detract from your beauty, you imagine big brown splotches covering your face. The other problem with only ever hearing what you look like from others, is that their opinions are mostly based on their own predispositions. They don’t necessarily tell you that your hair color doesn’t suit you because it really makes you look ridiculous, but because purple is not the color they would have chosen for themselves. This realisation, is really where my journey to find the person I wanted to be, began.
I now knew that beauty is different for everyone and that the opinion of others really shouldn’t matter. The problem was not them, it was me. I couldn’t see my own beauty, so no matter how others attempted to change my appearance, different clothes or hairstyles or even make-up, couldn’t hide my discomfort with myself. There were too many voices and contradictory opinions and I didn’t know who to believe after a while… It was draining trying to be everyone else’s idea of perfect and I was so tired of constantly feeling self-conscious and afraid that I didn’t measure up. In the end it was the echo of that one phrase “beauty is in the eye of the beholder” that finally made everything crystal clear in my mind.
With blinding clarity, I figured out that I don’t need to know what others think of my appearance. I don’t need to please them, I am not a canvas for others to paint on. Don’t misunderstand me, by no means am I saying that I shouldn’t have to take care of myself or look my best… Quite the contrary actually. What I am saying is simply that I need to figure out what I like, get to know myself and learn to where my skin with pride.
This doesn’t mean that I won’t ask a sighted person whether I look okay, but it means that I have learnt to know the difference in that person’s answer between: that colours simply don’t match and I would never wear those colours together. I have also learnt to know who I can trust to give me an honest answer taking my personal style and personality into consideration.
People, visually impaired people included, often get carried away by the power of sight. What others can or cannot see, almost becomes more important than the way we see or how our thoughts and feelings can change our interpretation of the things we see. What we forget however, is that our minds are far more powerful than 20/20 vision.
Without ever having seen any of the people I care about, I know that they are far more beautiful and precious than the most perfect creations, simply because they hold a special place in my heart and that is essentially what that phrase means. That beauty looks different to all of us and that is perfectly alright. This means that I can make decisions about my personal preferences and decide what I want to look like, because at the end of the day, I have to live with myself, be kind to myself and love the things that define who I am, because if I can find happiness and joy within me, I can recognise and embrace all the beauty around me and I will be able to accept the way others see me and know that the feelings and opinions of those who care about me, should be treasured and not disregarded merely because I cannot see myself through their eyes.
In one of the Harry Potter books, Hagrid says “I am what I am and I’m not ashamed. Never be ashamed, there’s some who’ll hold it against you but they’re not worth botherin with.”, and that is how I choose to live my life. I know who I am, I don’t need to see anything to know what I am comfortable with and if that’s not enough, it doesn’t mean that I am not enough. I can accept that we see things differently, but I won’t allow the opinions of others to change the way I see myself for it turns out that losing yourself is much easier than finding what you have lost.

MY LIFE ON THE DOTTED LINE

I went to school for the first time when I was about 4 years old. It was a school for visually impaired children, but initially I was not in a class with blind children. I could see better then compared to what I can right now, but I was still pretty much as blind as a bat. So after a while, I was moved to the braille section and connecting the dots got a whole new meaning. I was told that braille would change my life and that it was the most important skill I’ll ever learn, as if knowing braille could somehow cancel out the fact that I can’t see… And perhaps for the first few of my formative years braille did actually change my life. It was the late 90’s to early 2000’s and technology was nowhere near as fantastic as it is today, so I found entertainment in the braille books I could find in the school library. I spent hours and years learning all the combinations and contractions and by braille standards, I could read fast and I had no problem spelling words.

My biggest problem, was that I truly hated braille. I realised that sighted people could read much faster than me and they could get a book as soon as it was published whereas I had to wait years for the book to be available in braille. One regular A5 textbook can turn into several large volumes in braille and apart from the dreadful task of having to lug all those books around in a supersized bag, getting books in braille is a slow and expensive process…

While I could read and spell, it turns out that I was wholly unprepared for life beyond braille. I nearly failed my entire first year at university because I couldn’t get all my study material in braille quick enough and even when I could, there was just so much to read that I had no chance of ever getting through it all in time for tests and exams.

I started looking at other options and with a shock I realised that while we were being told of the importance of braille, others have moved on and it had become possible to live without those six dots completely.

I got a computer and a screen reader, the latter not costing anything, I got a cell phone with screen reading software and later years, applications on that phone that can convert written text into spoken words instantly. All of a sudden, I could buy my textbooks in electronic format and gone were the days where I had to rely on others to provide me with braille books or instructions or even labels. Audio functionality became popular and it was like seeing colours where before everything was black and white.

Today I have mixed feelings about braille… I can still read and write and spell, I just prefer doing it with my ears, using a computer… Occasionally I’d like to label documents in files using braille, but I haven’t actually used braille on a daily basis in 6 or 7 years.

My transition from braille to screen readers was not smooth and it took time to learn to do everything by ear and I wonder how much easier this would have been, if I was introduced to screen readers when I was younger.

The reality is that no one but blind people can read braille and it isolates us from society. If we insist on only using braille, inclusive education and inclusion in employment will only ever be a dream.

While I am not saying that I never should have been forced to learn braille, I am merely suggesting that we should not get so stuck in our ways that we refuse to explore other alternatives to the detriment of visually impaired people. Especially in light of the fact that this is not the 90’s any longer and technology has exceeded our wildest expectations and what once seemed like a fantasy is in fact a reality today. What works best for one person, might not necessarily work for others and by having to learn to study with a screen reader at the age of 19 I fell behind when I was thrown in the sandbox with sighted people, because it was like while I was busy learning to read, they were speedreading and studying and I could not keep up.

I know things like braille displays have been taking the world by storm, but to me, buying one is still more expensive than simply using a screen reader and bone conduction earphones or any other earphones for that matter and I have been doing well without one for the last 7 years of my life, so I guess I am just one of those people for whom braille was more of a hindrance as opposed to a solution.

My point is that we live in a world where we have options and you are the only one who truly have an interest in your life, so don’t just except what others tell you at face value, get all the information, look at all the available options and make decisions based on your needs and lifestyle and even if your choices don’t make sense to others, you’ll be much happier and better adjusted for having made decisions that are best for you.

A SERIES OF AWKWARD ENCOUNTERS WITH A GIRL ON THE EDGE OF ORDINARY

This week at work, one of those incredibly awkward blind moments happened to me. I was trying to walk around someone and didn’t see that the person had actually stopped in front of me to smile and wave… He then just assumed that I was rude until others explained that I am blind and could therefore not see his “hello wave”. Anyway, that got me thinking of other blind moments and while some leave me laughing a little at how uncomfortable it was for everyone involved including me, others annoy me to wits end. What follows is the most awkward things about being me.
While there are so many to choose from, my mind keeps circling back to a few particular incidents, that happen over and over again and every time is just as bad as I remembered.
1 No matter where I go, someone always wants to pray for me. I was walking home from campus one night and a girl came running after my boyfriend and I, practically begging us to let her pray for us. After a drawn out argument about this, we finally just said no and as we were walking away, she kept yelling after us: “BUT HE HEALS!”. Unfortunately, this happens everywhere, on trains and buses, in the streets and in shops. These people never ask what I’d like them to pray for, always just assuming that there can’t possibly be anything worse in my life than not being able to see. We won’t even get started on the religious side of all this, because what I believe or don’t believe, is nobody’s business but mine…
News flash friends, blindness is all I’ve ever known. Have you even considered that being able to see all of a sudden after years of not seeing, might not be an adjustment I want to make? Blindness is not fun, I know this, but I do not hate my life, and naïve as this might sound, I think that I am exactly as I should be, because my life has a purpose and I am not afraid of living with a disability… My blindness is not the boogeyman. Apart from the fact that I just don’t want to be prayed for, these people have often endangered my safety as well as theirs… It is not a good idea to grab a person who cant see you by the arm and start manhandling them to get your attention. “I’ll give you a hint, one or both of us might get hurt.
2 My guide dog is exactly that… A guide. You cannot whisper directions to him expecting him to get me there and then walk away absolutely delighted with your ability to solve a problem without having to interact with the crazy blind lady. Luca did not understand you, he didn’t lick your face as a “okay I gotya thanks”, it was probably more a “hello stranger, do you have a treat?” lick and the result of that completely idiotic moment we all shared, is that I will still have no idea where to go, so thank you, I probably ended up being late for something.
3 The good old myths… No, I do not want to touch your face, my hearing is quite average and anything you saw on Daredevil is a lie!!! I do not arrange my money in a special way. The only time I have ever counted my steps was once when someone wanted to pray for me and I couldn’t think of any other way to get rid of them… I got so into the counting that I forgot to check in with my cane, tripped, fell down a curb and swore so badly that who ever wanted to pray for me, left in a hurry, probably deciding that I am a lost cause… He didn’t even help me up before getting out of there. So in a way, I guess it worked.
4 That time I was asked how I dress myself and how I don’t end up looking like a confused chameleon… Oh who am I kidding, that wasn’t just one time. Depending on how much time I have, my answers range from the truth, which is that I know which colors go together and I am practical when I buy clothes, to ridiculous stories of how Luca taps his paw once if I look okay and madly starts chasing his tale when I don’t, I never even bother with the “how I dress myself” part of the question, even a child knows the difference between a shirt and pants and just because people often talk to me like I am 3 years old, does not actually mean that I am a child.
5 When people point at things and I am expected to know what we are talking about or when they hand me a form for my signature only to realize that I can’t see… “full disclosure, sometimes I just sit there, letting that moment of “oh shit what now” envelop us completely, before I inform them that if they place my finger on the line and provide me with a pen, I’d be happy to sign.” You may be wondering, how could I do something like that? Well it is funny and people should learn that it isn’t nice to assume things about others.
Perhaps you are wondering how I always manage to get myself in these situations, the truth is, that it happens more often than you would think. I don’t know a disabled person who doesn’t have similar stories to share and while it is sad and hilarious at the same time, every time it happens, I am reminded that I have a long way to go before I can pack the blind jokes in, because without them to deflect those uncomfortable moments, most strangers are still left flustered in my presence.

IGNORANCE IS NOT ALWAYS BLISS

Dogs are not referred to as man’s best friend for no reason. I met Luca when he was 18 months old and it was love at first sight. He is a fur ball of joy and in our 5 years together, Luca has been a constant source of joy and love in my life.
I spend hours scratching his ears, rubbing his tummy or just touching his body, so I noticed that lump that suddenly appeared when he was about 3 years old. At first I thought it was nothing, surely Luca was too young to have lumps… The lump got bigger and then when he was about 4 another one appeared just behind his foreleg on his ribs. I could no longer tell myself that it was nothing and that it would go away. The vet was keeping an eye on the first one and had assured me that it was nothing to be overly concerned about, but now Luca had 2 lumps and the first one all of a sudden started to grow bigger. Six months later, I decided that it was time for action. I contacted the vet and told him that I wanted him to surgically remove the lumps. The lump on Luca’s shoulder was now so big that his harness started rubbing against it and caused bruising and he also developed a lump in his neck.
The vet told me that they would remove all the lumps except the one in his neck, I can’t even remember the reason for that decision now. After the surgery, I asked that the tissue be sent to a lab for testing, because I had to know what I was dealing with. The tests came back and the vet phoned me to inform me that it was mast cell tumours, but that they removed all of it during Luca’s surgery.
Relieved, I thought that it was the end of the ordeal and I almost forgot about it until I found a new lump… This time on Luca’s hind leg almost by his tail and shortly after that, another lump on the inside of his other hind leg. I took him back to the vet, who told me that it was just fat-like lumps, but that we would keep an eye on them.
I worried, with Luca’s history, I wasn’t sure if doing nothing, was the right course of action.
In 2017 I moved to Johannesburg and in September, a few months after Luca turned 6 I took him to a vet close to where I stay, as it was time for Luca’s annual check-up. While there, I asked the vet to just have a look at Luca’s foreleg, because he had 3 new lumps there and to also just have a look at the lumps on his hind legs.
The room got quiet and after a while, the vet told me that all the lumps were mast cell tumours. He informed me that it would have to be removed immediately, but that Luca had to go for an abdominal scan first because with these types of tumours, the cancer spreads to the abdominal organs first.
The week I had to wait for an appointment at the animal hospital who could perform the scan, was agony. Luca is the best part of me, for almost 5 years, we walked together, he slept by me, he went everywhere I went and I could not imagine a life without him. I decided that I would wait for the results of the scan and if the cancer had spread, I would speak to my vet, but I would not put Luca through treatment that would ultimately just make him feel sicker.
On the day of Luca’s scan, I took him in and the 30 minutes I had to wait would have been the worst of my life, if a friend had not offered to go with me.
Luca and I were lucky, because when the vet brought Luca back, he informed me that Luca’s organs looked very healthy and that the cancer has not spread.
Elated, I took Luca in for his surgery where 4 lumps had to be removed. Afterwards the vet phoned to say that it went well, but that they found a new lump on his back that would have had to be removed the next day. This is how it went for 3 weeks. It felt like every time we removed one lump, another lump appeared, but finally after a month, 3 surgeries and removing11 lumps, we were sure that everything was removed.
Luca looked like something out of a horror film, with bandages and stitches covering his body. My heart broke every time he bumped into something with the cone he had to wear, but I knew that he would heal and be my happy and healthy dog once again.
Mast cell tumours might seem like harmless lumps, but it can multiply or appear to be something other than mast cell tumours such as an insect bite or allergic reaction etc. and the cancer can spread. Some of Luca’s surgeries were not easy as the cuts had to be quite long and deep to ensure that all the cancerous tissue was removed. The tumours on his foreleg therefore proved difficult as there was not a lot of skin to close the cuts after the tumours were removed. This type of tumour might also destroy the body’s ability to heal itself and there were concerns that Luca’s wounds wouldn’t heal.
The vet was fantastic, he took the best care of Luca and he has healed so nicely that if you didn’t know where to look, you would never know that anything bad has ever happened to him.
If I have learnt anything it is that you know your dog better than anyone. You have to speak for your dog, you are his voice and sometimes, you have to be proactive. You won’t always be right, you are not a vet after all, but trust your instincts. No one should have to endure what Luca and I went through. It’s stressful, there are countless sleepless nights and treatment is expensive.
Find a vet you like and trust, keep taking your dog to that one vet, voice your concerns, be insistent when the situation calls for it, but most importantly, listen to your dog, know your dog. If you are familiar with every inch of his body, you will be able to detect changes early and perhaps save the life of your best friend.
Luca will turn 7 soon and for the first time in four years, I rub him and all I feel is the soft velvet-like texture of his coat and smooth skin, I can still feel some of the scars, but his heart is beating and his tail is wagging and for him at least, the events of six months ago is a distant, almost forgotten memory.
For more information, see the link below:
Mast Cell Tumors – The National Canine Cancer Foundation
http://wearethecure.org/learn-more-about-canince-cancer/canine-cancer…/mast-cell-tumors/

DEAR MR EDUCATION OFFICIAL TAKE A FREAKEN BOW AND THEN NEVER VOICE YOUR OPINIONS EVER AGAIN!

I am that cliché People speak of…. The one who studied law in the hopes that it would improve my chances of one day getting a job, but more so, because I want to make a difference in the lives of other disabled people.
One of the first things I learnt, was that in South Africa, and many other countries, laws aimed at protection of the rights of people with disabilities are either woefully inadequate or it simply doesn’t exist. The more important thing I learnt, was that more often than not, in addition to a lack of proper legislation, we live in a society where many people are ignorant of the difficulties faced by people with disabilities and we therefore need to educate those around us and the education system of every country, is a fantastic platform to teach others and destroy the barriers that separated the disabled community from society for so long.
Perhaps you then understand why I was shocked speechless a few weeks ago when I saw a headline: “ALGERIAN EDUCATION OFFICIAL SLAMMED FOR ATACK ON DISABLED”.
I thought that we have at least progressed to a point where we can expect better from those we entrust with our education… I was so disappointed that I couldn’t even enjoy my second cup of coffee for the morning.
The article went on to state that the official refused to apologise and according to him, disabled people are useless to the country and undeserving of their state grants. “now I don’t know about you, but where I come from, a disability grant is barely sufficient to cover a month’s groceries…” How you are supposed to afford rent and transport and medical aid is anyone’s guess and from what I understand from the article, is that it is even worse for disabled Algerians.
He is of the opinion that government provides everything to people with special needs and that they don’t contribute anything to the country in return. I have no idea when 40$ a month has become the equivalent to everything, because I am willing to bet my favourite Harry Potter mug that it hardly scratches the surface. I mean, the average Algerian salary, is close to 400$ per month, “so Mr Algerian official, explain to me how disabled people have it so good?”
The unemployment rate for people living with disabilities in South Africa, is more than 99% so is it not perhaps possible that disabled people would forego that measly state grant, in exchange for gainful employment? You just can’t put a price on dignity and equality and had disabled people been afforded similar opportunities to their non-disabled peers, perhaps their contribution to society would have been invaluable.
I suppose that it is easy for him to sit there in his cushy office chair and judge a group of people he knows nothing about, simply because he feels that he is superior to those with “special needs”. He doesn’t care that we spend our entire lives trying to create a place for ourselves in his world despite the lack of desire to accommodate us in any way. And well let’s be real for a moment, it’s not as much that he has a problem with our so-called ineptitude, as it is that he simply doesn’t want those “weird disabled” people messing with his idea of who is worthy of living in his perfect little fantasy. The idea of having to interact with us, makes him uncomfortable (and that dear sir, Is your problem, not ours).
It baffles me that where disabled people are concerned, discrimination is as commonplace as thunder after lightening. Yes perhaps there are some charity organisations that capitalise on society’s belief that disabled people need handouts, but there are enough disabled people out their who have decided to take back their futures and fight against these degrading stereotypes that such headlines shouldn’t even be worthy of my attention.
So I’ll remind myself that small minds, cannot imagine that their might be another side to the coin. That official observed a group of unemployed disabled people, perhaps begging for money on a street corner and instead of considering the possibility that they simply ran out of options, that sacrificing their dignity and pride was not something they wanted for themselves, but that circumstances forced their hands, he assumed that they chose that life. He felt uncomfortable and decided that rather than doing something about it, he would condemn their actions and make disabled people out to be nothing but a nuisance, because it must be so much harder being the government official than it is being the disabled person who knows that life is hardly ever fair.
I sincerely hope that old age treats him well, because from what I hear, it’s no picnic when your body and mind no longer work as it once did… But what do I know… according to him, I am disabled and therefore by definition, I know nothing.`