I have often wondered how they learn to do it. Turn taking to them seems so natural, with no need to second guess their place in the sequence that runs so smoothly. Is it an innate gift that they are born with or do they have to learn by observing through body language? The invite of a smile or the slight nod of the head must give them the nudge to become the one who now captures the gaze of others. Could it be a metaphorical pass of the baton between the speaker and recipients’ hand that keeps the spoken marathon alive? It may even be the fraught expression in the eyes of the speaker that alerts the rescuer that they need to take over speaking to help save the awkwardness drowning in silence. Nobody ever tells you how to do it in conversations, turn take that is. They seem to be experts in a field that feels magical to me.
Listening intently for the emotion in the intake of breath, my ears try to decipher if it is inviting me to join in and respond, or are they just taking a breath in silence. Does the break in the conversation mean they are adjusting their body to deliver the punchline that expands on the unsaid? In the fraction of a second that dual loaded noise leaves their lips, my brain leaps into action to decrypt if the noise will lead to laughter or cries. Are they looking towards me for my views about the subject or are they looking into the distance to have time alone with their thoughts? Their eyes must be the lighthouses towards the cues in others, that scans for safety as well as the perils in the dance of the spoken world.
This confusion is always colossal in face-to-face situations, but even more so online where the mute button silences the rare cues that can help. The unhomely Zoom room that help many feel closer, distances many of us that are left guessing on what is connecting the avid participants. Maybe they are seeing something that aligns their minds but remains invisible to ours. The genius invention of connecting multiple people together at the same place and time regardless of where they are in the world can create unity and solitude in the same moment. The ‘us and them’ may always exist in every part of society regardless of how we try and change this. Diversity should be more about recognition than segregation as we learn to understand from a different perspective.
Being blind does not mean that my sight needs to be fixed, but it does mean that my world view can be changed from learning from the sighted. I will never pretend that I know what facial expressions mean in the context of a conversation as that is something I have never seen but I do know that a sighted person may explain to me something that I have missed. If I jump into a conversation halfway through a pause of someone speaking, I am crossing my fingers that they will understand that I did not know and was not doing it to be rude. When people use visual language in front of me and feel bad when they realize I cannot see, I take that as a complement not an insult as I feel included.
The basics of conversation may not seem like a barrier between the sighted and sight loss community, but it can be greater than you think. The life gains I feel sight loss brings does not extend to every part of life. Hiccups happen and misunderstandings are inevitable when we bring alternative knowledge into a world that we all share. Life would be boring if we all lived alike and never had another viewpoint. Being the blind one in a conversation with a sighted person, enlightens me to see the unseen which holds such beauty.
What does my Five-year old granddaughter love about herself?
“I love my hands as they help give things to people. They can also do sign language to people who cannot hear.
I love my eyes as they can help see things for people who cannot see, just like you Mam.
I love my ears as they can listen out to help people who are deaf.
I love my mouth as I can talk to people who need to chat”.
I have always known that she was a beautiful soul, but I never realized just how bright her light within was constantly alight until I asked her this simple question. This glimpse into the mind of an innocent five-year-old who has yet to query her worth in life, took me to a place that I wish we could all live. These ideas have not been forced into her mind in any way, they have just emerged from her authentic perception of what it is really like to live in a world with others with needs that are sometimes greater than her own.
She was just nine months old when Munch my adorable Guide Dog came to live with us so she cannot remember a time where Munch was not a permanent fixture by my left-hand side on days out. She has always been my eyes. When I drop something, she picks it up without being asked. She holds things close to my face so that I can get a better view of the blurry object and she mastered using my white cane as soon as she could walk, just because she felt like it. To her sight loss is no big thing, it just is part of her grandmother’s life.
Munch to her is not a Guide Dog, he is just family. I was told once by her teacher when I picked her up from school, that they had asked that morning what the name of my dog was. She looked puzzled at them and asked what dog ? With Munch weighing six stone and his head measuring thirty-three inches from the floor clad in a bright yellow and white harness, she thought they were talking about some other dog. She told them he was not a dog; he was just Munch.
When children grow up with disabilities and other differences around them, they can only see normality. They accept the whole of a person as they are and know no different. Children who grow up alongside difference see an expanded version of the limited world other’s live in. They learn that for every problem there are a multitude of different solutions and they learn to love unconditionally and never with condition. They are the teachers that speak with the wisdom that we never thought we would here.
When a five-year old talks of including those in society that are often left feeling excluded, they will never be alone. It is this type of child who accepts without effort or limit and sees beyond barriers that need never exist. Kindness can only come from a place that it organically exists if it is to be omnipresent in every situation in life. When we are choosing to be kind in life, we are choosing to live an enriched path that will never see us alone.
What do I love most about my granddaughter? Her pure existence and everything that it entails.
It’s that time of year again, when our hidden condition gets talked about. February is Marfan Syndrome awareness month which means that people are eager to talk about a syndrome that not even all health professions are clued up about, although this is improving slowly. Each person with Marfan Syndrome is affected differently, ranging from mild to severe and every form inbetween. Diagnosing such a complex syndrome is not the easiest for health professions but since I was diagnosed at 4 , this is just my version of what living with it is like.
Life is never boring with Marfan Syndrome around. I mean, expecting the unexpected in regards to health kind of keeps you on your toes and prevents you from taking life for granted. Being a connective tissue disorder means that most parts of your body are prone to playing up, although it is an unlucky lottery to which ones actually do. In general, Marfan Syndrome can affect the heart, eyes, lungs, skeleton and blood vessels but can affect any of the body’s connective tissue. From affected gums and overcrowded teeth to gastrointestinal issues and persistent fatigue, there is no size fits all diagnosis that applies to all. Personally speaking, Marfan Sydrome only affects my sight (registered blind with only partial sight from birth,) weakness in the lungs and skeletal system the most (scoliosis, multiple dislocations, joint pain, breaks and ligament and soft tissue damage). It could be far worse.
Growing up, I looked the odd one out, being the tallest in the class and being really slim with extra thick glasses. Today, you would find it hard to tell I have Marfan Sydrome being only 5’7″ (pretty short for a Marfan’s person), having a body that is built more for comfort than speed (my thin days are looooong gone) and I no longer wear glasses but my white cane and Munch my attention seeking Guide Dog may give others a hint about my sight. In my family where we have several members with Marfan Syndrome, the odd ones out are the ones without Marfan’s.
For me and many with Marfan’s, pain is a normality and I only acknowledge the pain when I am pain free. Joints often hurt, scoliosis sucks and random injuries like to make an appearance but that is just life. I opt for yoga over pain killers to help relieve pain and laughter over sadness of living with something that can be more than slightly annoying. I often forget I can’t see until I bump into something (a talent of mine) and always remember to thank my body for doing such an amazing job of keeping me alive. Yes living with Marfan’s can be tough but it can also be quite beautiful.
If I had lived elsewhere in the world, I may not have been able to have my 5 operations that I have had due to complications from Marfan Syndrome. If I had not understood the importance of health checks from such a young age, I would never have appreciated the beauty of life. If I had been born with perfect vision, I would never have experienced the perfection in life that runs deeper than surface value and would never have been matched with Munch. If I had grown up thinking that I needed to look like everyone else then I would never have developed an unconditional love for all. If I could go back and chose to be born without Marfan Sydrome, would I? Definately not.
Marfan Syndrome is a life long condition with life long lessons. Knowing the symptoms can help to save a life. Unfortunately, many do not find out that they have it until it is too late. Fatal aortic dissections may be the first and last indicator that someone has Marfan Syndrome. Those of us who are diagnosed with it are blessed to have the medical care to help monitor our health and have medical interventions to help us live out life to the fullest and for that I am eternally grateful.
What has it been like counselling young people during a Pandemic? Pretty s**t to be honest.
The young people themselves have been inspirational to say the least but hearing the impact this pandemic has had on their lives has been soul destroying. If you think we have it hard as adults, you can almost guarantee that there are some aspect of life adaptations that have been twice as hard for young people. Securely formed relationships, experiences of critical thinking , resilience building skills and a lifetime of coping strategies in our toolboxes of life gives us the ability to think outside the box of the global pandemic that we find ourselves in yet, we are still struggling. These character-building qualities that we have gone through as adults are areas that have yet to be gifted upon the young which makes their life that much more difficult.
Adding to that, many have laid blame at the feet of young people through the narrative in the media that they are ‘super spreaders and a breeding ground for the virus’, has not helped protect the mental health of young people at all. From listening to young people speak for the last ten months about how they have felt about being seen like this by many, they are whole heartedly doing everything that can to avoid being the super spreaders that they are called. They want to avoid contact with their vulnerable relatives and do whatever they can to keep their loved ones safe, but this is one thing we rarely hear of in the media where the blame game is very much alive.
Babies born during or just before Lockdown are growing up in a world that is strange to say the least and has the potential to have a negative impact on their development in many ways. Being born into a family with highly anxious parents is less than ideal but is a reality for many babies. Parents losing jobs, financial insecurity, concerns of health risks and deteriorating mental health will undoubtedly have an adverse effect on children’s development through no fault of anyone involved. Early year settings have seen an increase in delayed early development milestone such as toilet training and feeding skills such as use of cutlery, due to many childcare facility provisions being restricted and families being overwhelmed with life demands leaving them less time to dedicate to these nurturing skills. Again, nobody is to blame, it is a biproduct of where we all are collectively.
Families that are living in fear and doing their best to protect their loved ones from getting ill or passing anything on, are in turn isolating themselves from the support networks that were once part of their children’s everyday life. As the child’s world gets smaller and smaller with schools closing and family gatherings a distant memory, the only place that they can begin to heal is at home unless of course home is not a safe space. With domestic abuse incidents ever increasing and welfare checks from closed schools being ever more difficult, children need support now more than ever.
Being in lockdown has not only held negativity but it has also brought about its bonuses. From learning new skills to working from home in our pyjamas, if we look hard enough, we can find as many positives as negatives. Working with young people is no different and school related issues have become less of an issue for some as young people are forced to work from home. For children suffering issues such as bullying, and social anxiety for example have reported an increase in happiness due to school closures. Children with disabilities who find school unbearable at the best of times, are happier in their own secure surroundings where they are understood and accepted for who they are.
How can we help to enhance the lives of the children and young people in our lives? It may be easier than you think? Spending hundreds of hours listening to what young people really want during a pandemic has taught me a lot about the value of simplicity and acceptance. Treating a young person with equality should not be just an ideal that is hard to put into everyday practice as we navigate our way through parenting a teen, but is a basic human right for them just as it is for us. Intergenerational voices work best when in harmony so what can we do to help? Here are a few tips that can help both you and the young person in your life live a happier life.
1.Allow them the right amount of space
Too much nor too little will work, but somewhere in between is ideal. When a young person who retreats into the safety of their less than hygienic bedroom, they are doing so because they need too. It is nothing personal, but they need space . Laying in their beds for most of the day is just part of the evolving teenage brain so why try and change the inevitable. Us lounging on the sofa after either a hard day at work or a boring day of doing nothing tires us out as it does to them too.
It is also as important to connect to prevent feelings of isolations creeping in so scheduling in suitable time for family activities that you all agree on is important. Rediscover the fun you used to have when the children were younger and get the Play Dough out. Choose something that reminds you all of happier times and decide as a family what the right amount of space works for everyone.
2. Relax the routines.
The brain loves a bit of pattern and predictability but being a slave to tightly scheduled days can be as detrimental as having no routine at all. Routines work best when no changes ever happen in life but if there is one thing that we have all learnt during the pandemic is that change in life is inevitable. Children brought up with an extremely strict daily routine can have their worlds turned upside down when they are forced into a situation they have never been in before. Anxieties, uncertainty, lower adaptive skills, and impaired decision-making skills can all result when things are the opposite of having nothing but structure in a day.
We know that the world of play needs unstructured play along with structured play to allow the imagination to grow and life is no different than that. Questioning whether the family routine suits you alone, as opposed to the needs of the whole family can help. Exposing children and young people to change and decision making is helping them build cooperative skills for the relationship now and in the future.
3. Sleeping patterns are individual.
A new-born baby can sleep an average of 17 hours a day, a 5-year-old up to 10 hours a day and 8-year-old 7 hours a day. When it comes to teenagers just scrap all that. As the teenage brain parties on until 4am and sleeps in until noon at the earliest, we need to make exceptions. They are not purposely annoying you when you can hear them up and about in their bedroom , they are just doing what the brain is meant to do. Asking a 14-year-old to be sleeping by 9pm is like asking you to stay awake until 4am. Unrealistic and never going to happen.
Sleep for most people has changed during the pandemic and many of us have been invited back into the world of the teenage brain as thoughts and worries keep us awake at night. Try and help them develop a good sleep hygiene plan that helps them sleep for a length of time that suits them, not necessarily you. If it does not work, be patient as this stage in their life will not last forever. Giving them a hard time about not being able to sleep will not help but understanding will. If they need a mid afternoon nap so be it.
4. Listen to what they are not saying
If you see a change in your young person, ask them about it and really listen to what they have to say, if they do not want to talk to you, make sure they are talking to someone. Do not be offended if you are not the one that they want to confide in, see it as a compliment. It is so hard to talk openly about emotional issues with those closest to us as we do not want to hurt them. Whether it is a family bereavement or an issue with identity, they sometimes need to speak to someone who is that one step removed from them to be able to open freely without feeling judged or hurting a loved one.
If you notice a change in behaviour such as severe withdraw or being stuck in one emotion (anger, sadness etc) start the conversation. Offer them unconditional love and support and if that fails, research with them to identify a place that they can talk whether it be with another family member or with a counsellor or online charity. Reassuring them that you are there when they need to talk is all that is needed sometimes to help them feel safe to open up
5. Show gratitude more than regret.
You are the best teacher that they will ever meet so use it wisely. If you are always complaining about everything that is wrong in life, they will see a life full of disappointment. If talk about a life full of fear, then you are teaching your child that the world is an unsafe place. You cannot expect your child to find the happiness in life if you have never showed them where to look. When your child catches you smiling at your playful kitten, they will learn to love cats. When you show them that they are loved no matter what, they will learn to love the flaws in others. as much as their strengths.
Explore together situations in life that bring both good and bad reactions. Be grateful that they got the motivation to sign into half their online lessons and not focus on the missed ones. Be thankful that you have had more time together as a family at home and not on an expensive holiday. Thank them for helping in what they do and not highlight everything they do not do around the house. They are doing their best so acknowledge this.
Life will not be like this forever, but it is like this for now so let us learn to embrace more and judge less. The mask you are wearing that shows the world that you are holding everything together , could be the same mask that your child is wearing too so unsubscribe to the masquerade in life and choose a different way to connect with your mini me in life.
Nothing feels the same anymore for anyone. Wishes for a normal Christmas may not be granted in memorable 2020, but many new wishes may well come true.
For us, I am expecting less footsteps to walk through the door as mixing with loved ones is discouraged by those in power. The chaos of the usual Christmas cheer that comes with a large family, may be quieter than any other year. Recycling bags full of wrapping paper may be overfilled on another living room floor from our gifts that get opened elsewhere. The shelves in the fridge may groan with less food as family members eat in their own homes over the festive period. Christmas Eve may lose its magical powers when no cookies or milk are left out here for Santa, but I am sure he will not starve. These changes may not be ideal, but they also need not be devastating.
We will soon mix again with the army of family that we are blessed to be born into and seek out a rare spare chair in a room full of people. Four different conversations between loved ones will at some point fill each of the four corners of the room as people catch up with each other. The desire for giving presents may be replaced by the gratitude of the pure presence of loved ones alone. Food will once again taste better when sneakily shared from a friend’s plate when social distancing is a thing of the past. Santa’s best fan’s will at some point leave him goodies in front of equally excited friends and family just before the little footsteps make their way to bed. The new normal button will be pressed again after this seemingly long pause.
With a new baby Grandson bringing hope and joy back into the family, Christmas is far from spoilt this year. It may be different, but different can be a refreshing place to be in as change is sometimes as good as a rest. As with most, 2020 has made me stop and re-evaluate life from a different perspective. We can either choose to battle the unfairness, pain, and hurt of this year or we can choose to celebrate what we have been left with. Either way, we are going to create more of what we feel and think about. Admitting to ourselves that our version of life is just one way of seeing things and acknowledging that there are more positive ways of seeing things can sometimes be the most bitter pill to swallow in life. We are not always right; we are sometimes wrong.
For the first year ever, my four children will not all be here on Christmas Morning. My eldest may be with her partner and my two beautiful Grandchildren whilst my other daughter will be doing her midwifery duties of helping to deliver babies on Christmas Day. The house will still be full of my two son’s mischief and beauty as they play with Munch and Angus the cat, so half of Christmas will remain the same. It may be a different Christmas, but it does not mean it will be a less special one for everyone in different ways.
However, your new version of Christmas goes, I hope you find peace and beauty in places that you may have forgotten existed after living in this year of change. New traditions need to start somewhere.
I know what you are thinking. It is a Yeti croissant but no, you would be wrong!
That is the thing with assuming with our eyes, we never really get it right no matter how hard we try. We can never utterly understand what our eyes are tricking us into believing, as we only really see one perspective of an object that fits in with our world belief. Being led around by my hairy soul mate Munch lets people think that he is working for me, whereas anyone who knows him will know that I really work for him. Leading me to a place we need to go, results in a treat or two being eagerly hoovered up and me giving him at least a ten-minute worshipping ritual, telling him how he is the best living being ever in the world. We have found our power balance in our relationship and let us just say it is far from equal. Anyone with a Labradoodle knows that the power always lays with them and never with us.
The deception of looks alone has led us to many a faux pas in our four years together. From being mistaken as Munch’s trainer as I “didn’t look blind enough to have a Guide Dog” (???) to being asked where my collection bucket was for the imaginary fundraising collection someone though I was doing as a fully sighted person with a Guide Dog, assumptions can be wrong. Assuming Munch’s innocent face is incapable of being one of the world’s most notorious ball thief, is also another misconception. Maybe now is not the time to go into his known alias of “Good Boy” that everyone calls him when really, one of my friends knows him as the Pasty Thief that gently and lovingly alighted a pasty from her three year old daughters hand just as it was about to be transported to her mouth. A swift pasty replacement later and all was forgiven but the name has still stuck.
For me, one of the most infuriating misconceptions in the world today is when people criticize the “youth of today” from the narrative of the media alone without enough experience to make up their own minds about judging a whole section of society. Admittedly, I am slightly biased having worked with children and young people for the last twenty-six years on and off, but at least I have a privileged insight into their world. Working in schools with a Guide Dog brings with it many comments being directly and indirectly aimed at me. Some are hilarious, some are tactful, whilst others are said filter free but I for one love variety, so all are welcomed. There are times however that are heart melting such as the one that happened last week.
Asking Munch to “find the steps” for us to lead us to our room, he quickened the pace before stopping at the end of the steps for my foot to find our starting point. Having the fuzzy triple visioned blurry light colour ahead of us seemingly reaching up to the heavens (which the sighted call stairs), we began climbing. I was aware of two pairs of footsteps ahead of me going in the same direction and held back a little for us not to get in their way. Mid climb, one pair of light footsteps stopped and began coming back down. Just as we were about to move to the side to let the lively feet and attached body to pass us, they stopped just in front of us. A sweet-sounding teenage boy seemed to lean towards us and ask, “Excuse me, do you need any help at all?”
It took me a while to wonder why he would ask if I needed help? I began to wonder if I was walking in the wrong direction into a forbidden part of the school or if something horrible had attached to me on our way up the stairs when I remembered I couldn’t see and had a Guide Dog with me. I know it sounds weird but if you have never been able to see clearly from birth and everything is always a blur, you know no different and it is never really an issue. This is my world where I forget I cannot see as I have never know any different. It is when I am totally oblivious to the fact that it is a disability, there is always a gentle reminder that appears to remind me that it is. When I walk with Munch by my left hand side, I totally forget he is a Guide Dog as I chatter away to him asking him to turn left or right or find doors and objects whilst praising him as we go. The problem when you have sight loss living in a sighted world is that you sometimes forget that people can see.
When my brain finally caught up with what the sweet boy meant, my heart melted. He must have seen someone with an obvious disability (even though I was too away with the fairies to remember I had one myself) and took time out of his day to ask if there was anyway he could help. He did it so discreetly, lowering his tone not to draw attention which in itself showed what kind hearted soul he really was. I thanked him a lot for stopping to ask but said we were fine. As he went on his way he told me to take care which I wished him back as my smile widened. There are more Earth Angels around us than we realized. This seemingly small interaction between a teenager from the Sighted world and a grandmother from the Sight Loss world spoke volumes about the world we live it.
To him, his kindness was a natural part of his being . To me, his kindness was a gift that will get him so far in life that I hope his Karmic bank overflows. He saw me with a disability where I may have needed a bit of assistance. Whereas I saw myself as fully able bodied . We were both 100 % right in that situation in our own ways. I hope that he always has someone around to help him if he ever needs it.
If I had stayed in fear, I may never have a chance to kiss this gorgeous velvety nose.
Dogs were never really my thing. I never really ‘oohed and aahed’ over cute little puppies running around. This was partly because I could not really see them but also partly because I never really trusted them. I did not have full blown Cynophobia, but they were not my favourite animals to be honest. I was never bitten by a dog growing up or was scared in anyway by any, but I always had a healthy respect for the fact that they could turn if they felt threatened.
We had a cross Collie whilst growing up called Cindy who was with us for ten years until she passed when I was around fourteen. She was more human than dog so I kind of forgot that she belonged to the canine kind as she would come with my brothers, friends and I as we played Fox and Hounds and football. I was surprised that she was never scouted for a top team as she scored more goals than any of us put together. Cindy was one of us, other dogs were not.
I had a healthy respect for the ability of dogs to turn if they were threatened and therefore kept away from them. This was one of the stumbling blocks that I was hanging onto when I decided to apply for a guide dog. The main excuse I gave myself from applying for a guide dog was that maybe people I knew would question why I suddenly turned up with a guide dog when the majority of them never knew I had been registered as severely sight impaired (previously known as registered blind) for a number of years. The other main reason was however that I was not sure if life with a dog was really for me.
What would happen if I did not learn to read the dog’s signs of distress or if they were too hot and frustrated? What if I could not pick up on the cues that they needed something that I did not know about? What if the dog did not like me? What if the dog did not like coming into schools with me for me to carry out my job? The negative ‘what if’s’ snowballed more than the positive ‘what if’s’ until I got over myself and started turning the scenarios on their head and saw love instead of fear.
What if I tuned into the dog’s happiness as soon as I met him/her? What if I used my knowledge of their dislikes to arrange our lives to avoid them? What if our intuition synched so that we naturally picked up on each other’s needs? What if the unconditional love between our both species had no limit? What if the dog became part of the staff at the schools that we worked in and had his/her own fan club? My natural positivity trait began to chase away this alien negative frame of mind that had invaded my life. How would I know what life would be like with a guide dog if I was not going to try?
Three and a half years on, it is easy to look back and laugh at the imagined fear that nearly kept us apart. This face that lights up the life of many may have rested upon another sofa if I had not opened my mind beyond the sticky pit of fear. His strands of hair that lay across the house may have had to be vacuumed up by another hoover and his muddy paw prints would have to be mopped up into another bucket. Most devastating however may have been that his big squishy velvety nose may have been kissed by another pair of lips.
Facing you fears and doing it anyway will always bring about the unexpected and for me, it was magical. This mischief maker was worth the gamble. Turning fear into love may not be that hard after all.
Here we go again. Is it unreasonable to ask for some peace and quiet just for one day?It is bad enough that the two legged less hairy race that others call humans must walk around my home acting like they own the place. They may pay the bills and do work around the home, but they all know deep down that this was a far less important place before I got here. Before the Munch reign, they just had themselves to talk amongst and Angus the cat to communicate with. Now they have been introduced to what life with a real star is like as I took over the reign here from day one.Undeterred by Angus’s hostile swipe that greeted me as I first walked through the door, I knew that he would soon back down and be putty in my paws. With every surface that I bless with my hair with around the place (which to be fair is most surfaces), I am claiming the whole estate as my own. The indents on pillows from my sleepy head means that I, King Munch, allow the staff members to know that their spaces are all mine too.This makes my regal labradoodle heart sing out with joy as I know that my staff here love me as one of their own. I don’t like to remind them that they are lowly staff members and I am above them in importance as that would just be too harsh. What I do like to remind them of however is that Angus and Faith the tortoise are not always welcome in the same room as I as they only try and compete for attention which clearly, they are not entitled too.Admittedly Angus was here first but when it comes to cats versus dogs, we should always be respected.I for one have never killed another small bird or animals like Angus has done and brought it home for the maid. How dull is he? Does he really think that a dead mouse or bird on the floor is really a gift for squeamish vegan? I think not. I am sure she has not truly forgiven him for when the maid left an Imprint of her heel on the body of a dead rat he had brought into the house a couple of years ago. At least us guide dogs know never to leave objects in the way of a blind person. My toys are a different matter as she will soon her them squeak if she stands on them.As for Faith, she really does think that she is the new kid on the block. As not every household has a tortoise, but most have a cat or a dog, she loves all the attention that she gets from others. Playing the “I am slow and innocent” really doesn’t fool me as she is soon fast enough to clamber over my tail as I innocently sit at my maid’s feet patiently waiting for my share of the food on the maid’s plate. A tortoise can be more diva like than you think and there is not room for two of us diva’s in this family.On reflection though, I suppose being surrounded by the two legged less hairy race, Angus and Faith does mean that I will never be alone as that would break my heart. We all need others around us and although I know that I, King Munch, will always rule this place I cannot imagine life without them. Being part of a loving network of odd people and animals is better than being alone. Whoever and however you connect with others, keep making sure you do connect. Your funny tribe of souls that you find yourself surrounded by are really just perfect as they are.
I forget people can see me rolling my eyes. To be honest, I forget people can see.
When you have never seen a face clearly before as everyone is just a blur, you kind of forget that the sighted world sees everything. They especially see the things that you really don’t want them to see, such as eye rolling that I am rather partial too. Ooooops.
With a face that just cannot lie, I let my eyes roll upwards and to the side to try and search for a polite answer to the snappy sounding store assistant that stood before me. I am usually far more patient, but I had just experienced this London Bus Syndrome senario where for the third time in less than twenty minutes those dreaded four words were directed at me. To others, the words “you don’t look blind” may seem like a compliment and it is in a way but when it is said in an accusing tone, it really isn’t a compliment. It was this third London Bus that day that had come along after a drought of these well-meaning buses that had triggered the lively eyes rolling in my head.
Maybe my reaction was slightly more emphasised after she had said that she had “seen a lot of blind people in this shop and you don’t look like them”. A spluttered giggle remained inside of me. A colourful phrase stayed inside my head and did not escape my lips. What was more surprising was, I even managed to not bite back to her curt accusing tone with a crocodile snap of my own. The other two previous people who had stopped to cheery chat and said I didn’t look blind meant it in a positive light but this lady was different. She was like many we had come across in the past, which were the worst kind. The Sceptic.
Walking around with a physical disability feels like you sometimes need to carry medical evidence around with you to thrust in somebody’s face to validate yourself and prove their ignorance wrong. I understand that the primary source of information that many in the sighted world use to make decisions is their vision, but I sometimes wish it wasn’t as looks can be so deceiving. Having a unusual looking striking guide dog does not help with the stereotyping of what a blind person or a guide dog should look like either which she also picked up on. This apparent expert on not only what “blind people look like” but also an expert in the field of guide dogs as her next door neighbours aunt had one, thought that a Labradoodle like Munch was not a guide dog. The ignorance of others can really make your mind boggle. It does make me thankful that I do not use my eyes alone to make judgements on people that I know nothing about. Now that would be living with true blindness.
I really hope that my parting words to her would help her to broaden her narrow outlook on life, but I somehow doubt it. Cheerily uttering the words “we don’t all look the same” filled the silence between us with no reply from her as we bid her goodbye. Whether or not this planted seed will grow a more open way for her to see the world or not, I feel like I did my bit. I am still working on my poker face whilst persuading my overtly rolling eyes to calm down whilst in such situations, so maybe I will get there someday. Until then I will continue to clench my teeth and smile sweetly in my non blind looking way.
Judging will always say more about the person judging than the one being judged.
I am lucky enough to have my birthday the same day as World Autism Awareness Day on the 2nd April. I say lucky as to me, this day helps spread awareness of something that has been part of my life for the last 17 years. Jaidan, my awesome son with Autism has taught me to see the world in a different light and he has been one of my most inspirational teachers I have met. His self-awareness surpasses any expectations that a text book would say is possible. His empathy is core to all his actions and is not absent as experts would lead us to believe. Jaidan communicates in deeper ways that research tells us autistic people do. In Jaidan’s life, social interactions are based on a compassionate drive to accept others as they are. His imagination and flexibility of thought are processed in different ways and are just more concrete than fluid. He could not be more perfect if he tried. If I had a Birthday Wish, it would be for others to understand Autism in the way we have learnt to understand it. I wish others would know that
– Autism is only a part of the person and does not define who they truly are.
– Autism affects everyone differently. Once you have met someone on the spectrum you have not met everyone on the spectrum.
– There is no true stereotype of Autism, just as there is no true stereotype of the Neurotypicals among us.
– Autism doesn’t need to be cured, it needs to be accepted.
– Not everyone with Autism lacks empathy, in fact some research says that people with autism are more empathetic than neurotypicals.
– Processing of information is not faulty, it is just different.
– There are far more similarities between people with Autism and Neurotypicals than there are differences.
– Autism does not stunt dreams. it is the restricted thinking of others that does.
As Jaidan prepares for his next step in life in the summer University programme that he has been accepted for, I am eagerly awaiting what else he will teach me. Awareness of anything in life is best learnt from an original source. I hope that each birthday that I celebrate will be filled with increased awareness of Autism and how it makes a person the true perfection that they are.