The Difference - contd

(follow on from The Difference)

The way I like to think how people are is in a kind of pie chart where the folk you meet are set up into approximately 80%, then 10%, then 5% and then another 5% again. Not too hard to picture, and very much part of trying to understand why people are the way they are.

80% of the time I meet people who are supportive, kind and generally treat disability as something that means a person may need some assistance to get on in the world. They open doors to let wheelchairs through. They listen when you say that you are on a special diet. They offer lifts. When you are sick, they visit. They talk to you like you are an adult, with equal intelligence. They understand there are laws to protect disabled people and they understand they are important. Occasionally they get flustered, because some people care so much about getting it right, they worry they haven't done enough. They're the ones who call you before a dinner party to double check what you can or cannot eat. They buy ingenious presents. They go out of their way to include you and make sure you are safe.

Up until now I also did not realise just how important it is for disabled adults to be allowed to have plenty of time interacting without the focus of attention always being on their condition. By that I do not mean they need to have that completely ignored. It can be very helpful to be open about a person's condition, or mobility needs, or equipment they use. But it can be a nightmare to realise you are the 'special' one in the room, and that sometimes the last thing you want is for people to make a fuss. Getting that balance right is very difficult. The very best people in the 80% category wrestle with this, and try to make sure there is a ramp at the restaurant and an accessible toilet, and yet remember not to make a song and dance about it when everyone is sitting around eating dinner.

My theory is that everyone deep down finds it difficult to interact to someone who uses a wheelchair, or is blind, or deaf, or etc, etc. They feel all sorts of emotions, both negative and positive, as they watch their friend negotiate a dreadful kerb, or slur their speech to mush, or sit pale with pain that will not sodding stop. There are fears: what if they don't know how to handle that particular person? What does that say about them?  They begin to imagine how awful it might be to lose a limb, or an eye, or suddenly take a fit in the middle of the street. It stirs up misgivings about how they would cope if the tables turned. Perhaps that could be them one day wittering on about benefits, and doctors, and constant pain, and that is a terrifying prospect to contemplate.

I mean, imagine. What if that bus hit you, or a virus dissolved your functions, or a stroke took half your body over? How would you cope?

How are you supposed to cope right now? Have you just patronised your friend to pieces? What kind of support are you supposed to give? What if that means they've over stepped the mark and the help they've just offered is disempowering.

It is the ability to process these emotions that I suspect makes a great deal of difference how any person approaches another person with a disability. I suspect that very often people slip way past compassion and jump whack into pity. They feel sorry for that person. Obviously, they are different, and maybe even a bit special. And as soon as pity sneaks in, then patronising is absolutely on the cards. There is no longer a common link. There is just the need to be in charge, and talk in a loud but sympathetic voice.

That leads me onto the other percentages. The 10% section are those who say daft or even hurtful things, but usually out of ignorance. They don't mean to be mean. They just don't get it. Perhaps their humour is completely off, or they park in the disabled bay without actually realising it can make a heck of a difference. Their actions are not malicious, just stupid. One of my bugbears is people using disabled toilets when they don't have to. I know that there are many folk who have hidden disability's who use such toilets, and much power to their elbow. But if you're a parent who sneaks in with their children and their are no nappies to change, then please only do this if in absolute desperation. If not, it's a terrible lesson to teach the next generation. I'm guessing actions like this fit into the 10% bracket. Not meant to harm, but certainly out of thoughtlessness.

The first 5% most certainly do harm. They often twist and bend situations too. By this I mean, they often tell lies. They lie to cover up using a parking bay, and being challenged makes no difference to their behaviour. They may be a doctor who is unwilling to prescribe painkillers, so makes a chronic pain sufferer jump through hoops to get a prescription every time (this happens way more than you might imagine, and people in agony are made to feel like addicts when they have legitimate need). They may be a medical examiner who sticks so closely to their tick box, they are unable to acknowledge that the person before them is not only too unwell to work, they're not even well enough to have a medical.

They often reside in authority. Some of them in high places, with privilege and prestige. Their actions can leave a disabled adult penniless or homeless or in fear for their lives. They block employment opportunities. Or they force people into jobs that will most likely grind what health that person has left to the ground. They hate admitting they are wrong. They approach access issues with astonishing arrogance. They have become so wrapped up in their role, they are unable to see the person before them. And I mean that literally. They have become so hardened and so blind that they can ignore the cruelty in their actions, because disabled people are more like objects to them. They talk about 'them' as if they could not possibly be linked in any way.

They might function out of pity. They most likely see themselves as being 'caring' and therefore in this interaction, they are a 'carer'. This relationship requires that not only what they do being acknowledged as being right, it also should be acknowledged with gratitude.

In terms of the transaction analysis model - they regard themselves as the parent, and anyone who is disabled as a child. They do not meet their charges with respect. They do not look them in the eye, and acknowledge the shared experiences between one another, no matter what. They leave people with inadequate care without a shrug of conscience slipping in. And woe betide you if you challenge them. They will slip and slither and wriggle away from direct confrontation. It is their role to decide what is best for you. You asked for a cup with a straw, but it would be better for you to drink straight from the cup if they hold it at the angle they have decided would be best. It does not matter that the straw method has been tried and tested and found to work efficiently. Sit up nice, and sip the darned cup. Be thankful too - wasn't it kind of them to force you to drink in a way that makes you more reliant and less independent?

The final 5% are genuinely cruel. Many of the people I've just tried to describe are bullies, but this final percentage are bullies with knobs on. I've only met a few folk like this, and that has been terrifying. They operate out of hatred. They are malicious. Sadly, I've met other disabled adults that fit this category, and that is off the scale difficult to deal with. How they cannot see they are in the same boat is beyond me. These are the people who operate from motivations I cannot guess at. In the words of my mother in law - they are perhaps just bad b*st*rds.

I would love to say with the odds stacked towards 80% of the world being so nice, that this means life is generally hassle free. It is not. Sadly, the remaining 20%, with it's various nuances, have an amazing amount of power.

When you live with chronic ill health, it is a shock to discover just how powerful that small band of folk can be. I do not say this lightly - I have been in torture thanks to that harmful 20%. I know from the friends I have who also walk similar paths, that to find that so few people can have such a negative impact is overwhelming. The remaining 80% look on in horror and anger at the injustices that occur, but unless they have really tasted it, it's impossible to explain how that feels. To feel so powerless because there can be daily battles to get even very basic human needs catered for. Even more so when the powers that be are often the worst offenders.

A friend of mine recently commented when discussing doctors that the bad ones almost take away the impact of the ones that are good, because their actions are so awful. It's been after years of sitting in the shadow of powers that be that has triggered this second blog attempt. Nobody wants to feel they have no voice or sway in the world. This wee blog is mainly for that purpose. To make a little voice a bit bigger. Coz there has been plenty stuff to strike it hard.

Quiz

This is very useful for practicing for DLA/ESA

‎1. Itching
Do you have an itch? Is it behind your ear? If so please can you define if it is
a) Itchy?
b) Moochy?
c) Tiny?
d) Totty
e) Insignificant.

‎2. Bathing
What exactly do you wash? Bits? Bits and bobs? Up and down? Left? Right? All over?
a) I prefer a car wash
b) The cat licks me all over. I like it. I pay my cat as she is my P.A.
c) Baby wipes every time.
d) I use a scraper and olive oil
e) Bird bath (am applying for accessible one, due to recent perilous situation).

‎3. Sex
Obviously sex takes energy, and in order for us to assess how on earth you conceived you need to tell us in full and frank details how you ever got it on if your legs are made of cr*p?
a) I use Satnav
b) Hoist plus Velcro
c) Velcro plus clingfilm
d) E-bay
e) 4-ply and a bit of superglue. Plus fruit.

‎4. Eating
You do eat don’t you? Everyone likes to eat. It’s what normal people do. And that’s what you are. You’re just a Normal person who is ‘DISABLED”. Well done looking so normal, when, um, you’re not.
a) Jelly babies.
b) Jelly babies on toast
c) Satnav
d) I suck the dew off lemons
e) Whatever is left on my child’s plate.

‎5. And finally. Questions I have genuinely heard asked or that other people have been asked in actual tribunal situations.
a) So if your knees are sore, then how do you kneel down to pray (in church)?
b) How did you start dating (your girlfriend?)
c) Your bowels are loose X many times per day, (Not a question. An opening statement, straight after introductions)
d) Let me just test your babinski reflex (during a medical), with this. This was the doctor’s car keys.
e) You are too sick to complete this medical. Therefore you will have another one so we can assess how sick you are. (this happened to me. It took three medicals).

 

What is a SOYA parent?

Are you a parent with a disability? Do you do an amazing whack of stuff with your A*s on the sofa? Are you a wobbly bod? A bendy bod? A knackered being? Always in fricken pain? Then, you too are a S.O.Y.A. mum/dad.

You parent with the tiniest amount of energy and make it look enormous. You Sit On Your A*s a heck of a lot, and yet somehow dinners happen, children get fed, and you cope.

You deal with a deluge of cr*p on a daily basis. It is your role to negotiate a million bits of awkward body wrangles and smile like you are in a very glam film.
...
Why has this group been created for you?

Because when I was pregnant I thought it was a great idea. I was full of huge hormones. I fantasised about making a wee group and badges, and stuff and it got me through the weird and tedious mindfield that disabled parenting turns out to be. It turns out, the S.O.Y.A. mum in me still needed to make this page and witter on in my own wee merry way.

The Difference

The Difference

The difference is as clear to me as Gaydar. I can see it as soon as it happens. I want it to be Not True.

I want it to be my imagination.

But as soon as I detect that look, I feel queasy.

Some of you know me as Fairysparkle. I used to have a blog called Miss Fairy's Waffle at http://rhodiola.blogspot.co.uk/

I used to be able to access that (ironically), but now can't, due to fuzzy memory as to how it got set up in the first place. I have had many folk since saying, ooh, see that mad story you've just told me, you should blog about it.

Blog's take time. They take imagination. They take angst.

We had plenty of angst going on. I have jumped several years since then and although I'd like to think time has been kind, and I look not a jot older, there have been some lovely moments and some crashing lows, which means time sent us a mixed bag.

The biggest high was getting pregnant. Of course getting married has been fantastic, but this was like a whole load of icing on the top. Long story short, it took time till we found our wee baby. It was like he was hiding and we had to unlock a whole bunch of stuff to find him. When we did, it was like the deepest joy had finally found it's place and settled in, just where it belongs.

Whenever I post about our baby, my heart constricts.

It tightens because I know how much we longed for a child.

It was desperate. It was like living on a knife edge. It was like mourning before we began, because like I said, it took a while to find him. It wasn't till the very last minute we saw that all the hopes we'd poured in this pursuit actually had a purpose. So, I know, that there are hearts out there that beat every single day crying - where is my little one? I know, that even reading the word 'pregnant' can make a stomach turn. That there is a well of gratitude alongside the angst that spurs me on. It makes posting negative news very hard. No matter how sad or tough a situation is, I do know that we are very blessed. We got to meet our little one, and we will never forget the tears shed whilst waiting. Longing to parent is one of the vilest pains a person can endure.

I live on another kind of knife edge too. I live with chronic ill health. Life long disability. Life long misunderstanding.

I used to work in childcare. I was responsible for well over a hundred children over a six year period, first as a play worker and then three years in management. I was pretty poorly all of the time. My mobility was never great, and I ran on so little puff I have no idea how I managed it. Just before I got married, my legs went from wobbly to cr*p.

I was swimming every fortnight, and walking as far as I could daily and then over a period of months, I became housebound. I have no idea what made my mobility deteriorate, although there were factors that triggered a relapse that I can identify. Didn't explain why this time the relapse took away whatever makes legs go and this time my mobility did not return.

I have very, very limited mobility now. I can shuffle around a small flat with a stick, and a prayer as I also can collapse with fatigue with or without warning. My head is full of concentrating to get from A to B. I have literally no idea what walking without concentrating is like. I also have no idea what it feels like to walk to the local shops. Or to the end of my garden without fear. It's like this time, the legs went, and I lost the memory of walking along with it. Even in my dreams. Without a wheelchair, I am stuck. Housebound. Trapped.

The rest of me switches on and off in availability, and it hurts in various places all of the time. 24/7. No idea what energy and vim and co-ordination feels like. Or not hurting.

I  therefore have experience of  carrying out childcare whilst having an invisible but very real disability. Now I am a parent with an obvious disability. I have swapped. You can see me, coz I has a big wheelchair stuck to my a*s. A beautiful chair, and one that runs on electricity, but none the less, a fricken mobility aid.

And that's what makes the difference. I know how someone looks at me standing up and looking 'normal'. I now know how they look at me in a wheelchair.

So, it's a shock to realise that it really does happen. Being a wheelchair user has led me to seeing a look that instantly lets me know I am one of 'them'.

Not that invisible disability is easy. Oh my gosh - it's awful. It's just that this look opened up a different world.

So now, with a six month old son, and a heap of cr*p treatment, I decided to create SOYA mums/dads. Coz sometimes you just have to find yourself a new label. Other than - ooh, but you're just like normal like "other" mums. Except, you're not.