One to One?

Spent lovely afternoon today with group of mums and babies we met during the pregnancy. I know all of us are a bit astonished to find bumps turned into babies, and now they are all 6 months old. All unique, and all a bit yummy too.

Most of these mums we met through attending NCT (National Childbrith Trust) antenatal classes. These turned out to be a God send in more ways than one. Not least because the classes the NHS offered us flagged up some dreadful inconsistencies in the care we received because I have a disability.

Our midwife was adamant. We needed one to one antenatal classes, and she was going to get us them. This sounded great to us as we suspected a lot of my questions just would not fit into a standard class set up. There was talk of them being at a suitable time for my husband - of course he needed support too (pah, why make it convenient? in the end it was take time off work, or no classes together for you). I had to fight for those classes. After an initial burst of excitement that we were getting good accommodation, the heart sinking began.

Firstly the class coordinator argued with me over the phone - why should we have one to one classes? Why, what kind of birth was I going to have? Surely as a wheelchair user it would be caesarian?

I was not happy. The whole -'it should be a c-section' I'm going to write about later as it's an erroneous assumption to make, and one that caused me a lot of distress. I told the coordinator to talk to our midwife who promplty stated her wishes and got the ball rolling. First hurdle over, we set aside dates. I don't always ask medical professionals to be mindful of my perfume/aftershave allergy as many doctors don't wear it, but I had an instinct to inform the coordinator. This proved to be wise as she told me basically she wore a lot. I asked her to consider writing a post it note and putting it on a mirror to remind her in the morning not to wear any, as this is a trick another person told me they use as understandably it's a fixed part of their routine.(She remembered on the day. She did not however remember when she met me in the waiting room the next week, and insisted on standing very close to chat. Awkward. Much.)

Originally we were told we would have two classes, and this would cover everything. In the end we got one afternoon, which was mostly filled up with meeting the maternity physio to talk over possible birthing positions. The rest of the class was taken up with the coordinator taking us into the labour ward and us looking around one of the rooms. Although this was like seeing the holy grail in advance, and reassured me beyond doubt that the rooms were spotless, this was about the sum total of our antenatal classes. I estimate we were given under two hours of attention.

Now comes the very uncomfortable part - the past where staff tell us something that sounds so ridiculous it makes us blink. Apparently this meant we had covered everything they normally cover in the classes. There was no offer to give us another afternoon. Not one bit of discussion on how to tell I was in labour, or breast feeding, or anything else we thankfully did cover in the NCT classes.

We were lucky. The classes are discounted for people on benefits but even so, they were still not cheap. We could afford the classes and that was just as well. Without them we would have been left with an alarming lack of information. Instead of getting extra attention, we were given less than any other expectant mum. I was too tired of it all to make a complaint, but it still shocked me that we were given such neglectful treatment. Whatever you learn in antenatal classes there is one thing for sure - no matter what the content, it does at least do much to prepare you mentally for what is ahead. This was like being given a pregnancy book with most of the chapters missing, and a clear expectation from the hospital that we were to be very grateful.

Sadly what we learnt was this - watching a coordinator smugly present her measly offering was inredibly hard to bear. It showed so much lack of care to our needs; to anyone's needs in fact. Especially when we were told of the pride the hospital had in supporting disabled mums. In fact, didn't we know that they'd just had a mum in recently who was unable to use legs or arms effectively. Apparently the care they'd given her was excellent. I really hope it was. Ooh, maybe we could be pals? I said I'd be happy to give my email address but not my phone number. The coordinator then emailed this poor mum who'd only just had her baby. I'm sure she was delighted to be bothered at the time when she was so sleep deprived she was hallucinating.

I'd say the whole set up was a farce. It actually hurt because if we'd relied on this afternoon alone, I cannot even think what a state we potentially could have been in. Our whole experience was mixed, and still is, and regretfully our overriding feeling is this. Become a parent when you are disabled - be prepared to swim hard and fast and seek out your own support, because not only will it be given poorly, it will be given with a proud smile that belies just how abysmal the system really is.

It makes afternoons like today so precious - laughing together at babies tumbling together on the floor, and enjoying the richness of new friends and their growing children. A beautiful reminder that lovely moments can do a lot to hide the cr*p surrounding you.

Fame

Last night we took our baby JJ to house group. We’ve done this as many times as possible since he was born. JJ is a good sleeper…once he’s asleep. So, we were really conscious of him staying up as late as he could when he goes to people’s houses in the evening, just because it’s light and there’s chatter to join in with. At home, if he’s in his cot, the room is dark, his music thing is playing, and he’s a toy to play with, and someone pops in regularly to pop his dummy back in his mouth, then he will fall asleep. But any whiff of a party and he can keep the shut eye away for hours.

So, we decided that rather than heft a travel cot with us, we would try a blow up toddler bed, so he had somewhere to lie down on in a darkened room. We wrapped a blanket over it so he wouldn’t try to snuggle under the duvet bit, and tucked him into a baby grow bag (like a sleeping bag for babies). One bottle later, and a bit of dummy back in back out and he slipped into the land of nod. The window we have for taking him places has been fairly wide as he’s a bit of a cheery chap who adapts to different places fast. Everyone came for a gawk later – there is nothing as sweet as watching a sleeping child. If anyone thought our method was odd, they didn’t say. We have a lovely group, and those times of fellowship include cracking dinners, fast chat and lengthy coffees. This among other activities has led us to trying to be as creative as possible in making it work for all the family.

Adaptability is the name of the game for both me and JJ. Today we kind of took it to the hilt. I will be writing on the blog a lot more about how we got to where we are, because days like today make it look as if it’s fairly smooth going getting out and about. This has been part of a process, and it’s just that today was one of the highlights.

Tomorrow is the party for my husband’s birthday. We are having afternoon tea. It’s booked for twelve adults, one child and one baby and with one serving of wheat free sandwiches. We had stuff to finalise so after a very slow morning JJ and I set off. It was a risky time to get going, as we were heading towards the bus stop at noon. That’s translates as – JJ likes a good lunch at noon and I was mad to get a bus at that hour. I had brought with us one of Ella’s Kitchen pouches and a spoon so we could munch on the completion of our journey. We love Ella’s pouches. Perfect travelling food. And yummy too. I know so, because JJ says mm, mm, mm more eating pouches than anything else.

The bus arrives and we are informed they have a wheelchair already. No worries, say I, when shall the next bus be? Driver reckoned about another ten minutes or so.

JJ was in the Baby Bjorn carrier facing me. This meant he was on my lap and very secure. I had a pouch. I had a spoon. I had a bib.

Well, then, I thought, let’s have lunch.

Ooh, that’s brave you say. Yes it was – not only because the pouch had apples and carrots, it also had parsnip. And we hadn’t done parsnip yet.

I prepared the way, and the spooning began. JJ very happy, mm, mm, mm.

I will put in brackets the interactions of the day, so you can see a typical day, and the kind of conversations I have out and about.

(Woman at bus stop approaches. She tells me something incomprehensible about my bus card and a folder. I nod, smile and thank her. Spoon, spoon, spoon. I realise my bag is on the ground exposed to wiley robbers. I cover the bag with my foot. Oh, goes the woman, do you want that bag up? No thank you, smile, smile. She boards another bus).

(New woman approaches. She is baffled. What the heck are we doing? I show her the pouch. Oh, she says, I thought that was juice. How, she surmised, was it possible to spoon juice into a baby? I wax lyrical about the magical pouches till the bus turns up).

It’s going well. I board the bus and it’s one of the really big ones, which means I get to show off. I board, and then reverse park into the wheelchair bay, whilst the bus is moving. The journey is smooth. Well, then, I think, let’s continue. Spoon, spoon, spoon. Very happy baby. Food and changing scenery. I wander if this will upset his tummy but reckon that as he is upright, this should hopefully be ok. We finish the pouch, and I tidy up. The trickiest bit was trying to take his photograph afterwards. Nobody spoke to us on the bus. If you act weird, then sometimes there is a threshold. You can tell me folk thought nothing of it, but to be honest I think wherever we go, folk are trying not to say – ooooh, look at that baby, and the mummy in the chair. I was glad we got ignored; coz spooning food into a baby that likes to chat can be a challenge.

We decant and then we negotiate some terrible kerbs, but the shop we needed to get to had shut down. Plan B. We find a shop eventually that has birthday banners. I yank out my grabber that is tucked into a pocket at the back of the chair as they are up high. Two banners down, then eventually someone comes to see if we need help. Good. Coz as much as that is the ultimate in independence – it’s obvious I’m not that good at the grabbing trick from a seated position. We finalise our purchases and then I have to explain how to get the grabber back into the pocket. It has its uses, but suspect in the long term am just going to have to keep asking for help with stuff up high.

Time to get a cake, so we go to the supermarket, and after choosing that that we go to pick up a fresh Ella magic pouch for tomorrow. An assistant approaches, and full brownie points for asking after was there anything else, but when I said no, he accepted that and moved off without too much hovering. However, not before confessing he loves Ella’s pouches too! When he can’t be bothered using his juicer he whaps down one of the fruit ones. True dedication to your five a day.

(We leave and then the class act begins. A woman approaches. JJ is asleep now, after a bit of giggling and a sing song from me, as we whirled along. Oooh, lovely baby. Yes, yes. Such long eyelashes! Nod, nod. They are. I tell her about his big eyes, and what a flirt he is. So, she asks, how do you manage? She answers this herself – you just do, don’t you?

You know people in the shop were talking about you, she tells me, and saying, ooh, look at that baby and the mother in the chair? I smile. Man alive, it’s true. And I don’t even see it happening, never mind hear all the comments.

She then asks the question that does bug me, because it is no ones business, but I’m in the mood for a wee chat. Can you walk at all then? I explain how far my mobility stretches and talk a bit about how I’ve set up the house, etc. Ooh, aren’t, you marvellous, she says. She refers to my ‘Brave Wee Soul’ sticker on the back of the chair and tells me it’s so true.

Then, she touches my arm.

Oooh, she cries, I’ve touched a famous person!

Ooh, you’re famous!

I don’t know. I think I blinked a bit. It was sunny, and I had enough smiles left.

So she cries as she departs, how could I be famous then? I know, I could get pregnant at eighty four. I wish her all the best)

We deliver cake, banners, etc, and visit the disabled toilet and have a quick nappy change for JJ, before boarding a bus to take us home.

Famous or not, there ends my tale of out and about. Delighted to say, food stayed in the happy baby, and not one carrot stained item to be seen.

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.