Hello, My Name is Rita and I’m Misunderstood…

So what has left me scrambling for the kids Easter egg hunt chocolate (I’m going to have to order some more) this week?  Was it the first world problem of not being able to wear eye make up (Prof’s orders), or the fact my ‘price of a reasonably priced car’ (I also need to buy one of those too) eye is swollen (let’s not go there – just cross everything).  No, I’m particularly worried about persona, and, so to speak, the one we portray.

Do you wear a name badge?  A name badge identifies you as a member of staff at your place of work.  It enables the community who you converse with in your professional life, to be able to identify you and call you by your preferred name.  They can look at your clothing (what if it’s a hideous uniform?), check out your position (how far do they perceive you are up the food chain?), and clock your name.  Great idea labelling people isn’t it?  All the above information can be misleading.  A weathered looking cleaning woman in a tabard called ‘Mary’, could be a millionaire widow who spends half the year sunning herself on a cruise ship, and the other half keeping herself occupied cleaning an office block.  You just don’t know.  Some say you can tell a lot by a name (ask Katie Hopkins),.  Isabella (beautiful Italian), Doris (glamorous oldie with a blonde curly helmet of hair and smells of violets), and Deidre (dreary and with big glasses). You just don’t expect a Deidre to be a glamour-puss (sorry, if your name is Deidre I apologise profusely but stick with me and you’ll see where this is going).   We’ve all been there at some point, where you’re treated like poo because whatever cretin you’ve come across has made a snap decision on all of the above.  We feel outraged by it and the miscarriage of injustice can smart for hours, days, festering…preying and picking st you greatest insecurities.  It can make you draw attention to your flaws ‘yes, I know I’ve put weight on but I thought the whole of the Easter holidays you were allowed to eat chocolate for breakfast…’.  And we can try and hide them too ‘Yes, I’m fine’ whilst trying to navigate through a darkened room and trying to avoid the yellow signs, ‘I can recognise you really’…

You see, we don’t want to be caught out (disability or not) Having our weaknesses poured over; exposing our inner struggles and leaving us shaken and lying naked on the floor.  We don’t want to feel torn (see what I did there), we just want to feel safe.  But what about if your safety is out of your control?

This last week has been tough.  Visiting our nan (she’s Him’s Nan but I adopted her many years ago as our joint nan) after a dangerous fall, witnessed by the 91 year old fiancé (never a dull moment), I began to evaluate the use of labels.  Nan has dementia.  The once vibrant lady who was still golfing and playing badminton, well into her seventies, has fractured her hip and is very easily confused.  The worry we’ve been through has been awful, but all those keep fit classes she attended into her eighties, and her strong constitution got her through an emergency hip replacement and propelled her to the status of ‘Queen Margaret of Ward 33’, within hours.  Always a sociable person and a great conversationist, she was sitting holding court in the corner of the ward.  And, although no one has a clue what she’s going on about (even us who’ve heard it all before) she can still sing her hymns, recite her favourite poems, and crack many one liners.  To help everyone she has two pictures above her bed – someone falling and a butterfly.  Look around the ward and there are similar images above the other patients in their beds.  There were many falling pictures; these signify that they have had a fall.  There were three butterflies; these denote dementia.

Our Queen Margaret has  been living with this wicked illness for about five years now.  A cruel disease which has robbed her of her independence and love of adventure.  To help, in that time we’ve done many things to help her memory: pictures printed on T-shirts, mugs and placemats, of her great grandchildren doing various activities; photograph albums; a memory book and hampers of her favourite foods, (she loves her food and gets nasty when she hasn’t eaten) They all give her something to do and think about.  However, the journeys been quite terrible.  She’s scared of doctors, hospitals, she wants to stay with her family…only she can’t be left alone.  In her world we have to restart the same conversation every hour, where each time she looks at the memory book she thinks it’s the first time she’s seen it.  She loses loved ones regularly and she has to be reminded of people who’ve died on s daily basis (this is particularly awful when you witness the shadow of grief which slides across her face).  And me, the granddaughter-in-law she’s known for over twenty plus years, who she calls Rita ‘no, she was the babysitter’, or Wendy ‘she emigrated to Australia’…but it doesn’t matter if she doesn’t remember my name.  What’s in a name?  It’s just a label.  BUT, her eyes lit up with love and recognition when she sees us, she asked about my eyes (she does remember things) and she wanted to know where the ginger one was (Master moomintroll had been the day before and became a star attraction).  She also pulls memories from places and talks about long ago forgotten times we’d forgotten.  The fragility of the mind and the body is perfectly captured by the butterfly.

The good news is she’s recovering and hopefully we can now (because social services weren’t very helpful previously ‘we can’t help until she’s had a fall’.  However, they discounted the many fire scares and the need to disconnect the cooker) get her the professional help and support she needs.  Looking at her she looks strong, she can get angry, cry and perform to some degree to get her own way.  These have always been her inherent flaws.  At best she’s lively, kind, supportive, down to earth and full of love towards those who show her the same.  However, the little old lady with a butterfly and falling person above her bed don’t show any of these things.  To understand her you have to spend time with her, listen to her rambling stories, look at her memory book, sing songs with her.  An image or snapshot helps, but it takes time and patience to unpeel the layers.  Something the nurses have done wonderfully.

Although we try not to, we do make decisions based on scant information.  We don’t take the time to think.  Busy lives can make us lose sight and prejudices can occur without us even knowing.  Furthermore, we can be that friendly person who gives directions to the polite old Canadian man, who turns out to be a religious nut who tries to coerce us into going to a meeting condemning LGBT, abortions and same sex marriage (true story – hoodwinked).  The thing is, if like me and Him, you like people watching, what makes you decide on the different characters you construct for the players in your game?

SCENARIO:

You’re sitting on a bus and you look at the total stranger who has sat down next to you.  What do you see?  Is it an elderly lady with grey hair and a kind smile?  A young lad in a hoodie, with a sullen face, listening to music? Is it a good looking and well dressed (insert gender here), who makes you blush when you make eye contact? Or is it a person with a white cane looking at their phone?  The generic responses could be: pity, apprehension, lust and mistrust.

Who, out of the four above, would you choose to sit next to and why?

In reality, the old lady is wanted for shoplifting and has been running her own racketeering gang for countless years.  The young lad is an straight A student and is listening to King Lear in preparation for his a-level English Lit exam.  The good looker is a sociopath.  The blind person, well…So, would you alter your choice of bus companion with this new information?  Maybe your choice was based on your own age, world views, needs and life experience.  Maybe you choose due to your own insecurities and hang-ups.  Preconceptions, either way, can be judgemental, but the most dangerous results come from small worlds, which  breed narrow views.

Perceptions of what we think and know can be different to the reality.  Do you consider the reason why someone might be struggling?  Another’s poker face masking hidden turmoil?  I know the effect my cloak has had on my life.  Luckily, the people that matter have peeled back the mask and stuck around.  Others cut and run.  Current dreams of people and creatures in disguise plague me.  Also, there’s often stick in the media about people faking disabilities.  One such case is the backlash of the blind being able to use phones.  There is currently a campaign by the RNIB called #BlindPeopleUsePhones.  In fact, without phones we would struggle.  They can talk to us, direct us, read articles.  We can listen to music, talk, dictate and use the torch to find things on a dark floor.  Shamefully, I’ve sometimes wondered how certain things are possible: how can someone with ME study for a degree?  How can someone with depression be a hilarious comedian?  I think it says more about me than them.

So, do we all need a picture above our heads?  Maybe a hologram of a thought bubble above each of our heads which gives an insight into our psyches? Mind could be a black cloud, with a rainbow with a glittery eye patch strung across it.  What would yours be?  However, there’s a much simpler solution and it’s one which takes no technology and expertise.  What we all in fact need to do is not be a book cover judger, but instead we need to look at people as a blank canvas and paint a beautiful picture of their souls.  Kindness, forgiveness and a smile can build a thousand bridges.  Everyone’s on a journey, you just don’t understand the roads they have to take to get there.

Now look in the mirror, who are you and what journey are you on?  And think about what you would like people to understand about you.

Useful links: 

http://www.retinauk.org.uk/

https://www.rnib.org.uk/

http://www.retinasociety.org/

https://www.blindness.org/retinitis-pigmentos

2 thoughts on “Hello, My Name is Rita and I’m Misunderstood…

  1. Lisa

    Sadly Some beautiful stories are never read by some because they care more for the picture than the words. Stay strong xx

    Reply
  2. Kate

    We all need to appreciate everyone for their individual qualities. Sorry you have had a tough week, love to Queen Margaret. Let’s all pledge to judge less and empathise more.

    Reply

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