The One Show

I’m not sure what the chances are of talking to a film director for TV one week, regarding disabled parenting, and then a couple of weeks later being interviewed on the phone by the BBC regarding the same issue, for the average lady.

This recent series of events has coincided with a time of plentiful celebration of my birthday, and an enormous boost in the arrival of a surprise bunch of flowers from a company who wanted to send flowers out to people nominated by others who thought they deserved them. A mahoosive bunch arrived, the kind of size that required a Tummy Tub to hold them, and I just was overwhelmed with happy surprise. It felt like a big cuddle had arrived from the world and it had way more impact than filling two vases to the brim with beautiful blooms.

Our family got flamed hard by critics when our little boy was born. We cannot even describe how hard things were, as we are torn between telling it as it is, and protecting ourselves. We got cruddy treatment after the birth. Our care plan was disregarded and I was made very unwell by a combination of neglect and rough treatment from every single professional who should have been building us up, providing adequate care, and not making us argue with them all the time.

It can begin to strip you hard when you realise that there are that minority of people who do not support disabled parents, they undermine them, and they belittle them, and they act unlawfully to them. It can make it very difficult to get out there and interact. That massive bunch of flowers soothed a part of me that cannot help being on the defence, because it’s been attacked so often.

The first BBC phone interview, I let rip. I told them about how we were given two hours of antenatal classes, and therefore less than ordinary parents. I told them about the things professionals questioned; even when we had already described the solutions we were going to use to parent our baby. I told them how it felt, to be filled with joy and terror at the same time.

I got feedback with all the calls – about how I was not alone. There were many parents calling, frightened and bewildered by their treatment. How can you run to social work to assess you for your needs, when they are the ones who will turn that against you? Where do you go for support? How does all that feel?

Some time ago I led a song in the bounce and rhyme group I go to with my son. I felt shaky all over as I did it. I felt sick with nerves. I felt shattered that this was how hard my confidence has been hit. I have managed an afterschool club with many children passing through. I managed my own staff, and I coped with a ton of stress in the public eye.

I cannot explain what it feels like for that to be broken inside you. To be treated like a child whenever I want to get on the bus and the driver is incredulous that I need the ramp put down. Or that there was a nurse in my post birth week that refused to let me show her how I needed transferred from bed to chair my way without turning it into a long debate. Or that there was a time I was balanced on the edge of a bed, heavily pregnant to use a bed pan because the nurse did not know how to position me lying down (and refused to get assistance) and I was left in danger of collapsing and injuring me plus bump.

It wears you down. Now the flowers did some of the soothing, but the phone interviews went deeper. I was being asked about all the stuff I think about all the time. I was being asked to describe my experience and share what I thought. Then, I was being asked to allow a film crew come into my house and film my baby and I for The One Show.

I have no idea what the programme will turn out like. As someone who fears many things, for some reason slap a mike on me, and I am fearless. As long as my hair was done, I was ready. Of course they could come. It wasn’t till the night before that I realised it was Sophie Morgan who would be wheeling into my completely blitzed living room. She is like a babe on wheels. Very pretty. Very much part of my time being housebound, when I watched her model along with other disabled women.

This required much layering on of my favourite foundation and praying the camera would be been kind. Pacing in advance kinda went screwy, as the adrenaline was going like the clappers. I was buzzing like the mains had been attached to me all over.

A woman on the bus asked if I could walk at all. I did not answer her. I diverted her – polite but firm.

A man at mother and toddlers was rude to me, and I diverted him too. Polite, but firm.

I disagreed with someone at church today regarding how well the NHS is doing. Polite, but firm. I would normally have stayed very quiet and avoided the issue.

I so hope this repair lasts. It’s like finding a part of me that got lost. The part that coped when I dealt with mind blowing child care issues and challenged care commissioners in meetings to be more consistent in their guidelines. It was not fearless, and it cried plenty when it had enough, but it would have lead a hundred songs in a singing group without a flinch.

 

Sometimes us strong chickens look tough as f*ckety f*ck. We are so not. Ever cried till you nearly vomit, coz you are so blasted by the fight? That is sadly the place many disabled parents live – in a terrifying place. If they defend their needs then they expose their families. And they fight all the time. I really mean that – all the time, just to cover the basics.

I told all I could, and spilled my guts, and did not notice the cameras all around. I did notice getting miked up - that’s all a bit touchy feely in a rather ho, ho, ho way. My little boy was so angelic even I was a bit surprised. He loves the camera. He sat for ages in his bouncer and just watched and he acted like he was on some kind of cute advert for cute babies.

I told Sophie just about all I know – we talked about equipment (and the lack of it) and wheelchairs and their unique properties and bus drivers, and kerbs, and the extreme highs and lows involved raising a baby with alternative methods. I told her more than I thought I would about the treatment we had. I still aim to explore as much as I can of that on this blog. Paramount is the need to share equipment ideas.

There was much fascination over the Baby Bjorn sling I use to carry my son around with me as I wheel. It’s a perfect example of simple solution meets significant need. It requires an article of it’s own as it is both an easy peasy yet complex solution. It works beautifully. It kills my back. It cannot be used when I have a UTI in my kidneys. It is our freedom, and the best, best feeling in the world to have a baby on your lap. It is awesome in both senses of the world. I adore us wheeling together. I dread another UTI. It’s impossible for the medics to understand that my kidneys are part of my pram.

 

The sling sums up so much of the issues involved. The right solution can save so much finance, and time and energy, etc. But it may still be fragile and open to falling to bits leaving a parent stuck and vulnerable. It can be both awe inspiring and frustrating at the same time. As soon as my baby is too big for that sling I will weep. I love being the pram, even if my ribs have been through agony to the point of unbelievable at times. I hope above all that this is a time where more and more solutions explode into being, and isolated disabled parents feel they are all part of the same drive to better treatment for all.

(I will post up release date, etc when I know, etc.)

Just spoken to BBC, who say that programme most likely out 22nd November and that it looks great. Will keep folk updated.

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.

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.