Prove it or lose it

On occasion things annoy me. Mostly they are stupid things, or things which shouldn’t be stupid but are. Sometimes this country has stupid people in charge.  Take this for example: the government bombard us with messages about making sure you try to work if you can, rightly so, and only claiming the benefits you are entitled to (if you are entitled you must complete the Crystal Maze blindfolded to work this out), and if you’re not eligible you may appeal if you think the decision was wrong, only to be told ‘no’ again. Or maybe you appeal and this time it’s a ‘yes’, and they were just testing the water the first time to see if you’ll roll over and say ‘oh okay, I’m really in a bad way here but it’s no biggy, I’ll just suffer in silence’. Then the government will produce statistics detailing the budget deficits and figures showing of the amounts of people wrongfully and fraudulently claiming benefits or disability funding, not working and being a ‘drain on the system’, when they are quite capable of giving back to society with their skills.

Having spent 30 years being in receipt of one kind of funding or another due to my disability (aside from my newborn months and the first couple of years where I was just a fat unemployed baby, although ironically I did learn to walk at 9 months of age -that’s funny isn’t it!) I find this utterly astounding. How the hell does ‘Jason’ at number 49 with a so-called paralysed leg manage to get a blue badge for disabled parking, (which is renewed every three years and is only awarded automatically to people who are entitled to the Higher Rate Mobility Component of Disability Living Allowance), repeatedly have his application accepted, then one year gets caught doing sponsored Morris Dancing with his pub friends at the local summer fayre, showing just how skilled he is on two legs. How did he ever provide evidence for his ‘disability’ in the first place? It’s a complicated task on its own.

In the paperwork from my local council about renewing your blue badge which I have recently had the pleasure of undertaking, it says that they only issue blue badges for permanent disabilities or illnesses. Permanent. Not temporary. Permanent – as in – lasting your whole life, not permanent like when a hair dye promises permanent long-lasting vibrant forest plum colour, that only lasts about 6 weeks and turns your bath water mauve for a month at which point your hair is back to its default colour. No – permanent means it won’t go away. Like when you accidentally sit on a Sharpie, no amount of treatment is going to fix it, and you just have to live with the fact that this is life, and no amount of oxi-clean is going to take the crappy bit away. So if the blue badges are only given to people with permanent disabilities, why do I have to reapply for it every 3 years? And why am I constantly having to give evidence about my disability back to the government authorities/healthcare systems who diagnosed me?! Three years does sound like a long time, I know, and in some contexts it is. But when this re-application is just one of many, punctuating numerous other forms for disability… necessities, shall we call them, it is just one more thing I have to do that involves stressing about finding and photocopying paperwork to prove my identity and my address, and then other paperwork from within the last 12 months to prove that I am in fact, disabled and not just pretending. Then there’s always the worry that the thing I really need will be taken away or I won’t qualify and things will be that bit more difficult when they don’t need to be.

Where was I? Ah yes, so you’ve got your form filled in (black ink only because writing in blood is frowned upon so you must spend an hour looking for a black pen which works, in a household which provides only pink felt tips and pencils so small only hobbits can use them) and you’ve searched your household filing systems for the right documents, but you still have the added fun of providing a passport photo to go with some of these application forms. Hands up if you’ve seen a photo-booth recently? With the exception of about 5 ‘accessible’ (I use that word with a pinch of salt, as the jury is still out on the definition of ‘accessibility’) photo-booths in the UK, a standard photo-booth is ridiculous. The process of getting a passport sized photo in a booth when you can neither walk nor stand is quite the pantomime.  It begins with Tom lifting me from my chair into the chokey – I mean, photo-booth, like a human pendulum to position me on a ROTATING stool the size of a bloody side-plate, only to find it’s too low or too high for me to actually get my face photographed. This is more like the Crystal Maze, just without Richard O’Brien shouting “GET OUT! GET OUT OR YOU WILL BE TRAPPED FOREVARRR!” We then have to guess how much to spin the stool-of-death up or down, lift me up again from my chair and hope for the best. If it’s still not the right height I’ll just have to do an ostrich-neck because it’s beyond amusing now. Doing this for anything other than actual passport renewal every ten years is too much. At least then you might have holiday photos and a tan to show for the hard-work. I know you can take your own photo against a white sheet and have it printed the right size and on the right type of paper, sounds easier, but really it’s not as fun for everyone to watch and it would leave me with less to write about. And also photo-booths look more fun. Every child has had the painful yearning to go and sit in the photo-booth whilst waiting for their mum to finish paying for the groceries, looking suspicious as they try and peak inside to see if it is occupied or not. I am still that child.

My disability is well and truly permanent, it has never and never will get better. I cannot repair my nerves with a soldering iron and expect them to perform their usual duties. They’ve never done that so they wouldn’t have the foggiest what they were doing. If science found a cure for me that meant my nerves started working and I could start to grow muscles back, you’d probably find me lolloping around near the sportswear in Costco like a newborn giraffe who is trying to learn to stand, except I’ll be sniffing the beautiful lycra and luminous running shoes and not a pile of straw. Then once I’d finally learnt to use my legs reliably you could probably find me stealing my fiance from work and boarding the next plane to the Alps shouting “FREEDOMMMM!”

When I was originally assessed for Disability Living Allowance, I was but a small creature still able to walk although I regularly fell over, I needed help to get dressed, put my hair up, bathe etc, and couldn’t do all the things my friends could but I could still ride a bike, go to gymnastics and got swimming certificates. I wasn’t confined to any mobility aid. I was given the middle-rate of the DLA Care component which I guess was fair seeing as I was still a child and most kids need some form of care from their parents anyway. When I was a lot older, no longer walking and needing a lot more help to do most things physical (apart from playing Bop-It, I was awesome at that) my mum applied for me to be re-assessed for the higher rate of the Care component, and was told ‘no’. I was still too capable for them despite having no muscle in my lower limbs, breaking my wrist, falling regularly and injuring myself a lot due to my disability and not even being able to go to the toilet without help. My mum appealed the decision and it was overturned luckily, but if we hadn’t thought there was a chance they’d change their decision, I would still be deemed as able now as I was as a young child. This is definitely not the case, and if deep-down I thought I really was that able still, I wouldn’t give two hoots about wanting my physical limitations to be acknowledged to get the care I need as an adult. If I could still do now what I could do as a child I’d be happy. Despite being a bit floppy. I’d like to think I’d manage pretty independently.

On the paperwork about DLA, it says I will be ‘awarded’ Disability Living Allowance INDEFINITELY, (not quite sure what talent I nurtured for DLA to seem like an award, but whatever, I’m pretty sure it wasn’t my Bop-It skillz) which is great, yet still I live in fear that the DLA will be taken away from me at some point, and somehow the promise of INDEFINITELY, doesn’t seem so promising given the current government.

So DLA is a non means-tested medical ‘award’, like an ongoing Bafta for people who can’t do their own trousers up or make a cup of tea, and the Blue Badge scheme is only automatically given for permanent disabilities and those who get the higher-rate mobility part of DLA, and yet I find myself having to prove my disabilities for one reason or another most years. So effectively I’m providing information about me from one government service to another in the country which diagnosed me, in order to get what I need. Don’t they have couriers for that?

This brings me onto the latest kick in the teeth which was being sent a letter from the NHS Business Services Authority, telling me that when I ticked the ‘maternity exemption’ box on a recent prescription, this was checked and there was no evidence that I had a maternity exemption card. Apparently it is the plastic card itself that makes you exempt from prescription charges, not the fact that you have just had a baby or are disabled, and because I have had a general medical exemption card due to my disability, I never thought I needed another card for maternity exemption aswell, I just tiked the maternity box as I thought it was quite obvious I was in a maternal state, what with my newborn baby and leaking boobs and everything. So my medical exemption card isn’t something I look at often, and I don’t think I’ve ever had to show it as it’s probably quite obvious to pharmacists that I have a medical condition, but unbeknown to me this card also expires! Every 5 years! But seeing as for the last 6 years or so I’ve also been in either pregnant or post-pregnant state and eligible for maternity exemption, this is the box I generally tick. I asked the gentleman on the phone why they were trying to charge me a penalty for not proving via the medium of PLASTIC CARD, to the NHS funded pharmacy that I have had three kids in an NHS hospital, am disabled etc, when it is in my NHS medical records? Surely this kind of information regarding patients is shared, when needed, to relevant parts of the NHS in your local area? Nope! That would be common sense! The NHS needs me to tell them something that the NHS already knows is the case. It is ridiculous. Sending in forms and waiting nervously for responses for things which shouldn’t need to be applied for in the first instance. They know all about me, they don’t need me to repeat it every month.

This is why it perpetually baffles me that people apply for certain ‘benefits’ and have their applications accepted, services or funding provided when they are fraudulently claiming their state of incapacity, and yet meanwhile children, young people and adults with severe disabilities are being told they don’t meet the criteria and are having to fund-raise or re-mortgage just so they can get the wheelchair or the prosthetic leg or a carer which they need to try and live a normal life. These indecent liars when they are exposed, are helping to add layer upon layer of red tape and bureaucratic bullshit for those who could do with less of that kind of stress.

Surely humans have had enough of fucking it up for their own species. We’re the only organisms with our own welfare system, yet the idiotic few are messing it all up for the ones who actually need to make use of it, through no fault of their own.

By the way the Blue Badg/disabled parking fiasco is ongoing, but that will be touched upon when you’ve recovered from reading this blog.

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Have you used a wheelchair lately?

My guess is that, no, you probably haven’t. It’s really quite a fun and exhilarating experience so I thought I’d give you a factual account of what you’re missing. Any profanities are strictly necessary.

Having a sweaty bum and back for the entire time between April and November. For me this was especially awful this year as I was heavily pregnant. And being hot, pregnant and in a wheelchair brings a special kind of under-belly sweat that I bet you’re all jealous of. But being seated in a black chair constructed from man-made fabrics, nylon and sponge and not being to stand up and cool your butt down is just hideous.

People leaning on your wheelchair. There are only certain people to whom I have given special permission to lean on my chair if they feel they need to for any unforeseen circumstantial laziness. The rest of you, use your glutes. Seriously, you have plentiful bum, leg and core muscles which I’m quite sure have many uses, one of these being holding you in an appropriate standing position. Magical!. Use ’em or lose ’em. And while you’re at it, stop moaning about having to walk somewhere or go for a run to keep fit, you don’t know how good you have it.

I have eyes, ears and a brain. If I am unknowingly in your way, ask me politely to shift. It is never necessary or helpful to move a wheelchair-user who is a complete stranger, out of the way for your own convenience. This actually happened to me in a supermarket – an elderly man saw it as his job to move me slightly to the left so he could get to something on the shelf that he couldn’t reach. Probably denture glue. But I was actually quite stunned, as was my partner who then looked at this gentleman with utter amazement. Would he go up and lift someone’s leg to get them to step out of the way? I doubt it.

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The numb bum. Always a numb bum. (There’s a theme to this post isn’t there?!) You’d think after years of using a wheelchair I’d be used to it. However, each and every day I get an achey numb bum and have the urge to stand up and stretch my legs. But I’d have to quickly get back into my chair incase people thought I had been faking it all this time. Maybe it’s because I used to be able to walk albeit in an quirky fashion, so I know what I’m missing, but it never goes away. I can’t wait to get on the sofa at the end of the day to lay back and be in a position that isn’t a right-angle. Being sat down all the time also brings great joy when it’s raining outside (or inside). Your thighs face up to the sky and get drenched very quickly. A raincoat serves little purpose here..

No, we’re not all paralysed. Not everyone who cannot walk and uses a wheelchair is paralysed. Use your imagination for f*ck’s sake. Maybe my legs have been taken for use by aliens who move around their own universe using stolen human limbs and replacing them with useless, but very life-like, dummy legs. The aliens have immobilised me for their own benefit. Consider this a cry for help.

We weren’t all in a tragic accident causing us to lose the use of our legs. See above. Some people have experienced this kind of heartbreaking occurrence though, and I’m pretty sure some of the following applies to these people too. The question asked most often with the accompanying tilty-head of doom is “Oh, how did it happen? You poor thing! You cope so well though!” Oh crap. Do they want a biological breakdown of the faults in my Mitofusin 2 gene and how it has affected me my whole life, gradually taking my movement and independence, or will the simple answer “I have a muscle wasting disease” suffice?

Disease!? Hark! This girl is DISEASED! Step away immediately, we might catch it!

The jokes about women drivers and being in charge of an electric or even my manual wheelchair, never get old. In fact I’ve not heard enough of them. Please say more things like this so I can legitimately punch you in the face.

Last time I checked (which was never) wheelchair users did not feature on the list of banned or dangerous dogs. If you see one of ‘our type’ coming down the same side of the street as you and your little darlings, there is no need to yank your child out of the way, almost dislocating their shoulder in the process. I don’t bite children. They taste like snot and poo, and I live with three of them so really I’m ok with just rolling past you in a completely nonthreatening manner. But you’ve just made your kid scared of wheelchairs and people in them. Round of applause to you.

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Shopping and general wheelchair access woes. We’re in the 21st century with 3d printing and robots and cars that drive and park themselves. But we can’t work out how to make pretty much everywhere accessible to wheelchairs and have facilities for people who need them because of a disability. It won’t be cheap, but most things that are vital for disabled people aren’t cheap. But surely it can be done properly and not take decades in the process. Hopefully it’ll happen in my lifetime but I am doubtful. I mean, we must be quite a healthy, capable nation, or why would they not give more funding to local NHS care trusts and councils. Maybe disabled people are just moaning about nothing.

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The shitty wrists. You read correctly. And by shit I don’t mean my own or even humans in general. Dog shit specifically. People are idiots and lazy and perpetually leave their dog’s crap wherever it was delivered. Because who wants to pick up poo? Well not me and my wheels. And seeing as I don’t own your dog, or any dog for that matter, I do not want to find chunks of dog poo in the tread of my wheels and then the creases of my wrist/hand before realising what has happened. Some dog poos are highly stealthy and not obvious, hence why we sometimes wheel through them. No amount of Dettol spray and hand-washing gets rid of the horror. And here’s a picture because my teachers taught me to support my arguments with evidence:

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Any enquiries about trying out a wheelchair and experiencing all of this for yourself should be submitted via my facebook page or Twitter @shopgirlygm.

Check out another blog I love, and which inspires me to write about the crappy stuff more and try and illustrate the unillustrateable. Hurrah for Gin is hilarious.

 

 

 

 

 

 

 

 

Don’t take my baby 

If you haven’t already, I strongly suggest you trot over to the iPlayer and watch a BBC Three drama called Don’t Take My Baby

It is based on the true story of a disabled couple and their fight to keep their first baby. She has a muscle wasting condition and he has a degenerative visual impairment. 

As much as some parts of the drama were probably not exactly as they happened, and I do think a lot was over dramatised, a lot of it also rings true for so many disabled parents. It was a little too close for comfort at times and I’d be lying if I said that it didn’t upset me. It did. I felt angry and hurt and ashamed and tired that this kind of treatment of people with disabilities still happens today.

The beginning of the programme shows the couple as they go into hospital to have their baby, not knowing whether the mum, Anna, would even survive the caesarian section under general anaesthetic. They are scared, anxious, excited and apprehensive. The feelings that I’m pretty sure EVERY new parent goes through when they are about to give birth. However, unlike other couples, this couple then leave hospital and go home without their baby. Whether this actually happened in the real family’s case I’m not sure.  I think social workers would have lost their jobs by making a decision to disallow a couple the custody of their baby after birth,  and on the spot in that way, when their presumed incapabilities were just that, presumed. But as far as the story goes, they are given no chance to show whether they can look after their own child and are instead given daily ‘visitation’ rights under supervision at the hospital. 

For those who know me and who have watched this programme, you might agree that my physical capabilities as a parent are similar to those depicted and shown by the actor/mum (FYI, the actor has the disability. She is not an able-bodied actor playing a part of a disabled person) and to see this interpretation of what social workers do to the first stage of motherhood and of parenthood, is frustratingly accurate at times. 

When we knew we were going to have our first child, I contacted adult social care well ahead of time, to ask for more help from a PA for when my baby was here so that I could carry out my role as mum, especially when my partner was at work. I was told that nothing could be done and no assessment would be made until after the baby was born. Because that seems so logical, right?! (We were later informed that this was in fact the wrong way to do things, and that it would have made the process smoother had the funding arrangements been put in place before Amélie was born. Duh.)

But as it happens, it didn’t happen the right way round. They didn’t listen. Because how could I possibly be a good judge of my own abilities and difficulties?

So. Not. Sensible.

Not sensible and not in the least bit enjoyable having possibly the most unsympathetic and unemotional social worker I’ve had the delight to come across, sat in your living room while you and your baby are covered in equal quantities of breast milk, telling you that children’s services should be involved to ensure that there is no risk to your baby. To pass the buck of a costly disabled parent to another service, another service controlled by the local government, where I’m sure at the end of the day. the money all comes from. 

When it came to my recent reassessment earlier this year, my partner, fuelled by the same frustration and anxieties as me, came across a document titled ‘They Said What?’ By Jenny Morris, with the help of the Disabled Parents Network. I hadn’t realised someone who didn’t know me had written a book detailing exactly the same silly things we’ve heard from social workers….

… Okay but joking aside, it was uncanny. And hilarious; how could the same mistakes and misconceptions be happening all over our country!? Please read it.

Disabled parents are difficult people. An awkward bunch with no regard for sticking to the comfortable norm. But through no fault of their own. Not one agency or service will take responsibility for their care and so cases rarely get resolved and knowledge and experience is never shared. So the next case of a physically disabled mum (or dad, or both) due to have a baby, will be forwarded to social care services to be met with a response similar to – “oh I’m not sure about this. Janet, do you know who deals with this type?” In which case Janet will say something along the lines of “No, Beverley, beats me. Cc Children’s Services in to an email, they might know. I didn’t realise disabled people could even have babies.”

But this isn’t good enough. And we know it’s not good enough because of programmes like Don’t Take My Baby. And there will be people all over the country and possibly further who watch this and think that surely this doesn’t happen. But it does. 

Luckily for me and my partner, it wasn’t discussed whether we’d get to keep our beautiful girl or see her go into foster care. I can’t think of much that would be more harrowing.  Luckily for us my partner is able-bodied, but the threat of children’s services looking into safeguarding concerns was hideous and petrifying. I knew my baby was safe in our house, so why would anyone think she wasn’t? In reality, I personally don’t think there was ever an official concern about Amélie’s welfare. Midwives, health visitors and occupational therapists were collectively not concerned. The only concern was the cost of funding the extra PA hours to the adult social care section. They were safeguarding their own money and wanting someone else to pay for it. 

My experience more often than not has shown me that it is a game of tick boxes and money moving than truly about the welfare and needs of the individuals that social services exists to help in the first place.

The battle is ongoing and probably will be until my children have grown up and left home. I will never be able to parent my own children without being reminded of my cost to the state, and maybe I should. I battle with myself over whether it is fair for me to have children and whether taxpayers are happy to help fund someone to help me. 

But that is a story for another time. 

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You’re not invited.

To follow on from my previous blog post regarding the state of my ‘personal and social care needs’ (wait, I think I just vomited in my mouth), I thought I’d update you all on the still-going-on situation. 

After having to nitpick my way at an excruciatingly slow pace through 5 ‘average’ days in order for the panel (seriously it’s like X Factor only slightly more entertaining) to see what exactly I use my PA to help with, I sent the completed sheets back to the social worker. She sent them back. With revisions. Revisions which to the person suggesting them seemed completely fair and reasonable. But the revisions would leave me with crucial gaps where I need help to get things done on the days I don’t work and also on the days I do work.

One particular amendment would have meant that I wouldn’t be able to take my youngest daughter to a playgroup because, surely I don’t need help for every moment of being there. But what toddler do you know who adheres to a timetable of bowel movements or snack requirements? I need physical help to care for my children, they know that. So therefore it is a case of ‘which part of your parenting role is less important?’ Taking your children out to meet other kids and play, or be at home to make sure there are clean clothes to dress them in.

Fast forward a few weeks and the S-Factor judging panel want to know if they could casually chat to my employer about what help my PA provides me at work. And ask them why they can’t just pay for that help. Because surely they can hire someone else completely different just to help me tidy up and lift heavy boxes when other more capable staff do it for themselves? Yes that makes total sense and I have absolutely no reason to think that this intervention would at all make me feel like a burden on my workplace, to stick out more than I already do. Even if this part of the job role was carried out by my existing, perfectly good PA, why should the employer be asked to spend more on having me work for them when I come with this added extra cost? In what universe would it be favourable that they continue to employ me with my plus-one who they also have to pay, when they could just employ someone else, just like my other colleagues, who can complete all of the job responsibilities by themselves?

Wow. I’m seriously wondering if I should even work there myself. I am clearly not a capable person! Maybe I’m beginning to see what the Social Care team are gesturing at. I get it now..

..I shouldn’t have a job. By putting my degree, postgraduate and knowledge of children’s development to good use, for a charity who just want to improve outcomes for young children and families, something I care a great deal about, I am simply putting an extra strain on the economy, the welfare state, the local care trust and maybe eventually my employer? 

Dammit.

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Rock, paperwork, scissors 

My life has recently been put into a list. Broken down into a series of trivial activities which are apparently all that I am. They are assigned a figure signifying how much of each item I am entitled to do.

I didn’t ask for the list. It was given to me and maybe I should just be grateful and move on.

I asked for some help, and if you know me personally, you will know this alone is difficult enough for someone as stubborn as I. But I asked for help from the local care trust, to provide support to allow me to be as independent as I can. To not have to rely on my family and my partner to do things for me when they have their own lives to live day-to-day. My partner needs to have a full time job in order for us to afford our own home, and to raise our kids in the way we want, with the income we have. Ideally he wouldn’t have to work, and he’d be around to help me to the things I can’t do. He regularly does these things throughout the week, but he can’t work and help me at the same time. He is only one man! He needs his own independence too, I can be quite annoying. 

Of course, ideally we’d be bazillionaires, own a massive house with everything we want and need and not need to work, and enjoy doing jobs and making things better for others. We’d have a pool outside with sun loungers and a cinema in the basement with huge reclining chairs. We’d have an enormous shiny kitchen with an island in the middle and a giant oven and hob with 12 gas burners. We’d go and visit other countries and take our girls to see the world. Don’t say that’s not your dream as well because we both know it is. Nobody wants to earn just enough to get by, to co-own your house with a bank, knowing you’ll be paying back so much more than your house is worth. Groaning at the price of diesel at the fuel pumps, dreading the letters from BT to say they’ve increased line-rental prices by £2.30 more per month, to have to receive help from the state to pay for someone to take you for a wee at work. You know, the things everyone worries about. But sometimes things are necessary and for certain things we need to ask for help. 

Luckily there is a welfare state in the country I live in and for that I know I am grateful. What other people in less developed countries are lacking due to their country’s wealth or their government is sad. And I am grateful for what we have.

I will always be grateful for what I am given and it is important for me that whoever is reading this understands that. But right now I am struggling to respect the behaviour and attitudes of those in the power to give.  I am sorry that I want to scream in the faces of those people who are in a position to give me the means to the support I need, scream at them that they don’t get it. They just don’t get it. 

I am a mum. A disabled mum. A disabled mum whose two girls live with her at home because that is where they should be. So when the person who ticks the boxes on the oh-so-important paperwork suggests an  amount in the proposed budget, assigned for ‘childcare’, please, tell me how I am supposed to feel. Because for  over FOUR years, we have been explaining to those in the adult social care section of the local care trust that WE ARE NOT ASKING TO USE A PA FOR CHILDCARE. They argued with us before and after Amélie was born in 2011, with us explaining the help and support is for ME.  If MY needs are taken care of, from personal care, to helping me do the weekly food shop, and helping me carry out my role as a mum, (FYI, this falls under Adult Support services) then there are no concerns about my children. They tried to suggest that Children’s Services needed to be involved. We disagreed, as did the Health Visitor and my Occupational Therapist. Why should we be subject to being analysed by the same people who investigate abuse or lack of parenting skills, when there’s never been a concern about my kid’s welfare? Because, they were trying to get out of providing help for a disabled parent by claiming my child was ‘at risk’ if I couldn’t look after them by  myself. If they ignored part of the ‘problem’ that was my needs, maybe it would go away. Passed on to someone else with a slightly different form of paperwork. That was a fun time. It’s always nice being told you’re a risk to your own baby. 

 We pay a lot of money for our children to go to nursery when we work, that’s childcare. When I look after my children, that’s simply me being a parent. At what point have I ever asked for them to pay for someone to come in and care for my children while I sit there and have a mani-pedi? 

Anyway, back to the recent reassessment. Do you know how many hours were suggested I could or might use for ‘childcare’ (it’s not for CHILDCARE) out of the weekly amount?  

Three. 

Three hours is what this lady assigned for my role as a parent. As a mum. Three hours in a week. Of course this doesn’t mean I can only get my PA to do three hours a week of helping me take care of my own kids. It’s a figure that this person so kindly broke down theoretically into areas of the help I need, in case I can’t work that out for myself.  I ask my PA to work at certain times (usually just weekdays while my partner works full time) that I know I need help and a large part of that is to help me carry out the physical aspects of my role as a mum. Of course she does more than three hours of that. Which young children only need things doing for them for three hours a week? I guess I could only feed them breakfast on certain days, dinner on different days, send them out in their PJs a few times a week, that would save time.

Two hours a week she guessed as what I might use for ‘socialisation’. Bloody hell. What am I? A puppy? A prisoner being allowed outside with the other delinquents for a couple of hours each week, to get some fresh air in my lungs? What crime did I commit?

I promise I am not, and have never asked for anything I don’t think I need. I understand completely that this country is a little tits-up when it comes to budgeting and controlling its  spending. But I am not asking for more than I need. So why does my life have to be broken down into time and money every year in such an intensive yet careless manner? I am fully aware of the burden I place on the state. I see how much I cost them. Written down on paper just to rub it in. You know that shitty feeling you get in your belly when you know something bad is going to happen, like when you go into a chemistry exam knowing you did precisely 7 minutes of revision for? That feeling stays with me. It comes back to rear its ugly head quite often but it never properly goes away. 

So my last response via email a few days ago was reiterating yet again about the need to cover the physical help I need as a disabled mum, and I have yet to hear back about a more final figure they’ll allow me. Final. Ha. Of course I don’t mean final you silly goose! Until they decide to do this all over again.  And again. And again. There’s no continuity of care, we can’t get it sorted and get on with our lives feeling  assured. My condition isn’t going to improve, It only gets worse, so it’s like we have a general election in our lives every year, where our way of life may change in a heartbeat down to the opinion of whomever happens to get our case that year. 

In a particularly sad and depressing end to such a positive blog post, all of this makes me sometimes feel guilty for having my own children. For being a costly member of society because I selfishly wanted to reproduce knowing fully that there would be many things I’d need someone else to do for me. 

Of course, I don’t regret my children for a second. They’re a little annoying at times, waking us up in the night, puking on my face, and demanding to be fed several times a week, so selfish. But between the two of us we somehow managed to spawn some pretty cute and hilarious small people. I guess they can stay.

   
 

@shopgirlygm 

My baby just cares for me

I’ve often thought about the idea of being cared-for as I get older. I already use a personal assistant to help me out with all sorts of things both at home and out, and also to allow me to be able to parent my own children. As bleak as it may sound, assuming no cure for CMT is found within my lifetime (fairly unlikely I would say), then I can’t see a time when I won’t need a PA. But what about the thought of my own children caring for me as they get older? This idea gives me a particularly angry and frustrated feeling right in my gut. Worse than this, for me, is the idea that people will ASSUME at some point that my children will be young carers for a part of their adolescence and possibly adult life.

Now, I need to say here, that my views on child carers are purely my own, born out of my own experience of being a disabled person and then of course a disabled mum. Many people may have their own views on whether they think being a young carer is a fair and desirable way to live, but I’d hazard a guess at the majority of the population not really having any personal experience of this. Other people’s lifestyles and choices are not my concern here.

My concern is my own children, currently aged four, and 16 months respectively. Are they going to be pressured to thinking that they have to care for me when they’re of a capable age? Will they think they’ll have to help me get dressed or put my hair up for me before they can go out and ride their bikes? At what point does me asking Amélie to pass me something that I can’t reach from the floor, become her being ‘mummy’s carer’. It fills me with dread, confusion, nerves, anxiety, a whole load of other emotions and I wish it didn’t. What is worse is that I’m beginning to feel like I’m already asking my daughter to do things for me that other kids wouldn’t need to do for their mums. For instance, the four of us went swimming recently and whilst we were crammed into a pitiful excuse for an accessible changing room (think ‘disabled toilet’, and then…just stop thinking, because that’s all it was), I asked Amélie to pull my socks off for me. She was changed already and had been swinging off the grab-rails so I thought, a bit like a delinquent terrier, she needs a job to occupy her for the next few minutes. So did that constitute the start of her career as a young carer? Does she need to go on manual-handling training?

I forget where or when exactly it happened, but I remember once dropping my phone in a supermarket or somewhere, when Amélie was about two years old. I gestured to the floor and said “can you get mummy’s phone for me please?”, and at that moment a lady walked past as the cute little toddler passed the unidentified companion in a wheelchair her mobile phone, and said “oh that’s lovely, she can be your carer when she grows up”. My first reaction was to politely smile and return the jovial laughter but inside I felt my body tense up and I wanted to scream “no f*cking way, absolutely not”. I didn’t have children to provide myself with reliable live-in carers.

Children are annoyingly selfish anyway. Not a good trait in a personal assistant.

I guess the thought of your kids having to care for you in your old age when they themselves are past middle-age, is an entirely different thing. I think it’s kind of a given that as your parents reach their final years you make the decision to help them out yourselves in order that they wouldn’t then need to reside in a care-home. People kind of expect that to happen, and it is okay. But when a person, like me, has disabilities which start much, much earlier in life, it just seems unfair and unjust for people to assume your kids won’t even reach adulthood without having been a carer for a portion of their childhood. I already get unnecessarily worried that when Adult Social Care (shudder) conducts their annual review of my care package (yuck) they’ll see my children as young and capable teenagers as an easy way out of providing a monetary solution for me to pay for my own care. My partner is my carer part of the time. My PA provides care at other times. I don’t want anyone to ever tell me that “wouldn’t it just be easier for the girls to help you?”. No it wouldn’t be easier. It wouldn’t be easier on anyone.

I want my daughters to just be my daughters. Not mummy’s carer. Not a young-carer who might feature in a charity campaign watched by thousands of people feeling sorry for their lack of freedom and childhood, not forgetting the overwhelming sense of responsibility. I don’t want those roles to be reversed. I am their Mummy and their carer. They are my babies

Until I am old and senile, in which case I will call them Deirdre and John.

@shopgirlygm