It’s Mother’s Day in the UK today, and there’s lots I could talk about when it comes to being a mother.
I have three kids, ranging in age from 6 years to 7 months, with 3-year-old in the middle. When I was first pregnant with child #1, it was exillerating, exciting, scary, and new. Nothing had been experienced before except through observing other pregnant people around me, but nothing was to prepare me for what was really to come. Six and a bit years on, I’m still pretty much winging it at times, with the occasional moment of knowing what I’m doing.
With my eldest when she was a baby, I worried about everything – whether she had fed enough, whether she was putting on weight quickly as she was a tiny baby, whether I was doing the right thing by feeding her and putting her down, and letting her cry – because she’d fed and her nappy was fine so what else could she need at 2am apart from sleep? She surely had to understand as early as possible that cuddles and attention in the dark hours was not going to happen. Some people I spoke to agreed, and had similar sleep routines, and some had different opinions on how much attention a baby needs after feeding and changing had been sorted. I was pretty sure we were doing it right, although it was nightmarish at times and we were both shattered. But when we considered the alternative – co-sleeping or something similar and in the attachment aisle of the parenting shop. We got though the baby stage and came out the other end with a baby who slept quite reasonably by the middle of her second year of life and we had our nights back.
Then we had the sensible idea to bring another screaming human science project into our house. ‘We know what we’re doing….maybe’, we both thought at times, and we often heard people say something like ‘oh you must know what you’re doing if this is your second baby!’ Nor necessarily true but I could kind of see where they were coming from. With the second baby some things are very familiar, and some things come back quite easily like breastfeeding, which my second daughter took to like a baby to a boob, with no issues whatsoever as opposed to the first time around where I stressed more than anyone needs to, over getting her to latch on properly, being scared by hospital staff that she’d need ‘topping-up’ with formula in ber first few hours of life as she had not had many long feeds from me. Nowadays I know that that particular bit of advice was unnecessary and I needen’t have worried about her not feeding enough right from the word ‘go’. Of course babies need to feed, and to increase their blood sugar, but considering that their stomach at birth is literally the size of a small marble, there really was no need for me to cry over the fact that she hadn’t guzzled all 2oz of formula after a 5 minute feed from me, only for her to throw it all up everyhwere after. I probably would have too if I’d been made to drink about 5 x the volume of my stomach in one sitting. So with daughter 2.0 this part of parenting was a lot less stressful. Don’t get me wrong, the times they throw up an entire boob of milk before bed when they’re bigger, is definitely a pain in the neck, and there were many rimes when I’d worry that she had not eaten enough, and slept too much, but for the most part, a lot more successful.
With daughter #2, I was also a bit more easy going when it came to sleep. I’d still want her back in her own bed after most feeds because it is my bed and I am selfish – but in the very early days and for the odd night thereafter if she spent most of the night in our bed, co-sleeping as they call it, then that was that. She’s 3 now and has been in her own bed sleeping perfectly normally for at least 2 years, only stopping our bedtime feed at 2.5. I knew we had approached sleep better this time around, but I do have a lingering guilt that in fact with our eldest daughter, she was not sleeping at all badly – she was a baby and babies wake and need a cuddle. The problem really was that we had been conditioned to believe that from a few weeks old babies should be able to sleep solidly. Complete rubbish.
Now I’m on child 3, this time of the male variety and pretty much every situation is sprinkled with a generous layer of salt, rathet than a pinch. He spends the first 2-3 hours in his cot and then camps next ro me with my boob in his face for the remaining 6-7 hours. We both sleep better than if he was going back into his cot after every feed, there is minimal night hour crying and despite my bedsheets smelling more sicky than I’d like, it works for now and I know that he will sleep just as well as his sisters in the next year or so. So whilst the reality at the moment is that I share my bed with a sweaty 20lb boy most of the night, with his Daddy the other side of me, I know that reality changes very often and soon it won’t be like that.
Six years on from my parenting birthday, I have come to realise that children are extremely cute as babies, even when they grin at you with your nipple clamped between their gums. They are cute at times over the next few years, interspersed with moments when they might behave like a complete A-hole, but also have the capability to make you feel more proud than you thought was biologically possible, like when you leave them at their school on the first day of term.
How on Earth did we make it this far? I cannot for the life of me keep a house-plant alive, and I even managed to mess up growing my daughter’s pumpkin seeds that she won in school – but somehow, between me and my partner, we have managed to grow three complete children. They’re exceptionally good looking, fantastically irritating at times, but they’re ours, and we grew them.
We are not by any stretch of the imagination experts in raising babies despite having three insisting that they live in our house. Each and every day I have moments where I shout at them to get their shoes on instead of routing through the bag of never-played-with tat destined for the charity shop and I think to myself ‘shit, that was harsh, I’m really crap at this today’, or times when all I want to do is watch a BBC drama containing strong language througout, and these two girls just sit there on the sofa looking at me like ‘wtf are we going to enjoy about this?’ and I have to consider what is more important – my anticipation of finding out who killed Kay in ‘The Replacement’ or my darling children’s quality time with Mummy? Of course, it was spending precious moments drawing stickmen with the girls and laughing at their farts – that is until I got bored and tasked them with sorting out the shoe box so I could finally watch the last 3 minutes of this crime-drama really quietly and sat ridiculously close to the TV so the children didn’t start repeating obsceneties.
I’m not sure if I’m done having babies, if we might like to add another in a few years. Either way, the baby stage take:3 is rapidly reaching the end of the first year and whilst a relief, it is also tragic and sad that there will be a time when he has his last feed from me, and one day he too will no longer need to ride on Mummy’s wheelchair because he’s tired of walking. I’m enjoying being a mum, even if I don’t always feel like a mum when I can’t do something for them, and even if I have a habit of spending the first few months after habing a baby being a miserable slug. I know now that that is ok, and every othe mum should know that too.
You are allowed to be a miserable slug, shout at your kids ‘KEEP YOUR TEETH TOGETHER FOR CRYING OUT LOUD’ when brushing their teeth, and feed them hot cross buns and popcorn and claim it as a reasonable dinner. You are shattered, look like crap and lose the will to live every hour pretty much. But you are their mum and they won’t remember all this rubbish stuff. They’ll remember you reading them ‘What The Ladybird Heard’ without even needing to see the book because you are a seasoned pro, and they’ll remember getting into bed with you in the morning because you are the perfect bookend to their wake and sleep routine.
They probably won’t remember the times you measured their height and weight, and wiped away their snot for a photo so they’d sell quicker on eBay.
HAPPY MOTHER’S DAY.
Access to life….
For as long as I can remember, the word ‘accessible’ has been such a frequent word in my vocabulary. It’s not the most exciting or tantalising word, but it is a word that I can imagine most people only associate with a primary-school spelling test; ‘is it one S or two?’ Or noticing a sign on a shop door allowing ‘guide dogs only’, regardless of the shop staff’s own awareness of impairments.
The definition of accessible is that something can be reached or attained. How accessible is our society for the majority of people? I’d say pretty accessible – I’m not for a moment suggesting life is easy, but you finish school and go to the same college as your friends, you skip lectures to go to Burger King for lunch instead, and then you catch a bus home and watch MTV all afternoon while your parents think you’re at lectures. Then if you’re lucky, you’ll get good enough grades to go to uni pretty much anywhere in the country, and that means you could pick any course that you qualify for, knowing that the only test of your limitations will be whether you’re too hungover to sit an exam on a Monday morning.
But for someone with a severe physical disability, this isn’t how the stereotype goes. If you’re able to study what you want to in school (see my post about how this might not happen) you might go to college and study what you’re interested in, albeit with tedious roadblocks along the way, like whether the carer that college has provided for you will let you use the iron in textiles class, even though you’re 17 and know that you’re quite capable of not scalding yourself whilst ironing a piece of material. The attitudes aren’t always accessible, and stereotypes mixed with ignorance compliment this. Whilst the other students in your English Language class sit in groups of quickly-made friends, you sit at the edge because it’s the most ‘accessible’ table, as far as positioning a wheelchair goes. As far as feeling equal to your peers and always having someone to chat to about the coursework, sitting nearest the door in every classroom was not the most accessible place. Kids like to huddle in the corner together and laugh about what they’ve drawn on their maths book, they don’t like to be in the place where everyone can see what you’re up to. Uni isn’t always accessible either. Before I started uni, we had to argue with several of the accommodation team that the room wasn’t big enough for me to move my wheelchair around in, and as they had extended a room for another student in a wheelchair, we argued that they could do the same for me. Then at the end of my first year of uni, the porters tried to fine all 6 of us in the apartment for damage to the kitchen involving the fire extinguisher being taken off the wall, and one of the flat-mates climbing in and out of the window for convenience. Didn’t he realise there was a handy door at the front of the building? I of course denied any wrong-doing as far as kitchen windows and extinguishers were concerned, but I secretly quite liked that the uni had the audacity to try and charge me for it. Ironically that was quite inclusive of them. Either that or they just didn’t think and automatically charged us all. I’d like to think it was the former.
Like all teenagers, when uni finishes you have to think about growing up, which involves finding a job. Finding an accessible job is almost impossible for someone like me however, and despite having A-Levels, a degree and a post-grad qualification meaning I can teach early-years, I will always need a lot of help in any job I do. This can include someone to help me go to the toilet – even a so-called accessible toilet isn’t accessible when you can’t do your own jeans button up, and I don’t want to live in tracksuit bottoms when I have no intention of running a half-marathon in the same day. I recognise that this is a specific need that can’t easily be met without someone helping me, but to be asked to schedule your own toilet-trips when the local care-trust are working out how much personal-care you need for *toileting* (one of the most impersonal and ugly words in the world – at what stage of adolescence and disability does going for a wee become ‘toileting’?) is particularly inhumane and soul-destroying. I can’t describe the feeling of being thirsty and wondering if you should have a glass of water or cup of tea or if it’ll make you need to go again too soon, before your PA is scheduled to come back to you again. This is not an accessible way to live.
Neither is wanting desperately to go somewhere with other people who are able-bodied, and knowing that you cannot because the physical structure of the location won’t allow for it. I’ve been to newly built places and wondered how on Earth their accessibility-surveyors signed-off their facilities as meeting criteria. For instance late last year I was shopping with my friend and my newborn baby, and we went to the baby change/feeding room to change his nappy. They had a lovely comfortable and quiet area for breastfeeding mums, and out of curiosity I wheeled myself towards the door to look inside, only to find I could not get into the room. The doorway was unnecessarily narrow and there was no way it was regulation for either the modern or old-school requirement of doorway width. I then got in contact with the store, which is an internationally known brand, and then later met with somebody who tries to ensure their stores are inclusive of people with disabilities – even he couldn’t understand why the doorway was so narrow. This just proved that although the intention might be there from some areas of our world, the promises of being accessible don’t always stretch to something as simple as a breastfeeding room or a changing table that you can reach from a wheelchair. I expect the numbers of breastfeeding mums who also happen to be essential wheelchair users and who shop in that store, are so low it didn’t even enter the consciousness of the people who built the facilities to make them accessible from a wheelchair. However, the store has excelled in their idea of accessibility in other areas. Their accessible toilets are not only more spacious than I’ve usually found, but where possible there’s a choice of two rooms – one with a toilet on the left and one with a toilet on the right. Because guess what, people’s physical capabilities and needs are never the same as the next person with a colostomy bag or a wheelchair. Even something as simple as offering two layouts of toilet facility can make access to normal life, so much more attainable.
I could go on for days and days about accessibility, because it is not just about ramps or extended tap handles or braille on café menus (imagine that) it goes so much deeper, it is so vast and it affects just about everything. I’m lucky that the man I choose to share my life with is pretty strong and when we are faced with somewhere than I can’t easily access in my wheelchair, he will lift me out of my chair and into the restaurant for example, or he’ll lift my chair up so a few steps won’t stop us enjoying being somewhere. But it can’t always work that way and of course he’s not there for everyone else needing his muscular help!
So in order to make our beautiful world open to everyone who needs and wants to experience it, we need to look at what ‘accessible’ really means and who it affects. And then start the small task of making it right.
I’ve thought hard about writing this piece. The last thing I want is for it to sound like a disabled person droning on about something unfair that happened to them as a child or growing up. At the time I didn’t realise quite what it meant, but in hindsight, some people made some very unfair decisions.
You’re 14, and suddenly you have to choose your GCSE subjects (these are the compulsory exams children take in schools in the UK at age 15-16 that determine what college *high school* and subjects they can take in post-16 education, which subsequently determines which degree subject you go and study for, which in turn is likely to determine the kind of career you might go into) it doesn’t always work out quite like that though, and your career may have nothing to do with the subjects you chose to study as a teenager. Normally we might choose between languages like French, Spanish, German and Latin, between humanities like History, Religious Studies and Geography, and design subjects like Art, Food Technology, woodwork, electronics, metalwork and graphic design for example. Subjects like Maths, English and Science are compulsory, which is a good thing, although I’d like to think in the future young people would appreciate their free education at a young age enough not to feel like they’re being ‘forced’ to study for a Physics GCSE.
When it came to choosing my own GCSEs, there was a conversation which I think went something like this:
Head of Humanities: “Elizabeth, as you are aware the coursework project for Geography GCSE takes place, as it has done for many previous years, at Kynance Cove. This is a very rocky inaccessible beach, so basically you won’t be able to do the Geography GCSE”
Me: “…….um Okay…”
Or words to that effect. I guess that wasn’t really a conversation though, was it? Like I said before, I didn’t really notice what had just happened, at age 14. I had just been told that I wouldnt be able to do an entire GCSE because the couresework involves trips to Kynance Cove, which is beautiful I hear, never been there though personally. So given that we had to pick two humanity subjects out of three available, there wasn’t much of a choice. There wasn’t a choice at all, I would have to study History – The Industrial Revolution – and Religious Studies – not even one of the pretty colourful religions either, just Christianity and its musty damp churches. I think we only went on one school trip for RS, to visit a ridiculously tiny Church that I could barely move around in. And I do appreciate now that the Industrial Revolution was quite, um, influential and important, but at the time I wasn’t particularly bonded with the subject, although I do have the name ‘Eli Whitney’ and his Cotton Gin forever etched in my memory.
That wasn’t the end of the story though. When it came to the design subjects, I was told I wouldn’t be able to pick anything except Food Technology and Art, as the other subjects were too risky for me to possibly be involved in, despite having been in those classes for the first 3 years of secondary school, and I didn’t die then. I’m not quite sure why they came to this decision either, as I usually had an adult helper with me in lessons which involved me needing physical help (as I did in Food Tech and Art also, but I guess I was less of a liability with a spatula than a soldering iron) so it puzzles me as to why my school wouldn’t allow my helper to ensure that I’d be safe in these lessons in order for me to do a Graphics GCSE for the final 2 years of school for example.
Oh but that’s still not the whole story. Way back when I first started secondary school at the tender age of almost 12, I remember being quite excited that my mum had bought me the school PE (Phys Ed) kit, which consisted of a navy blue pleated skirt, I think, and a white collored t-shirt. Not very exiting you might think but it was an improvement on the itchy black leotard and plimsol days of Primary School. Ahead of what I guess must’ve been my class’ first PE lesson, I was told that instead of doing the same activities like running, long-jump, netball and even contemporary dance etc with the rest of my female peers, I’d be doing separate things with my helper. We’d spend a while in the basketball courts trying to beat my own records of bouncing a basketball, and at other times in my first few years at school I’d go to a local hotel’s swimming pool with my helper. Swimming was and still remains a good exercise for me as I can move about a lot more freely in the water, and the perks of my Dad being a Naval Officer meant as kids me and my brother had regular swimming lessons which I loved. However, this still meant I was separated from my peers and my two good friends whilst they were together playing team games and practicing for Sports’ Day, which I was never involved in for the 5 years of secondary school.
There were other times that I didn’t get to do what everyone else had the option of doing – like going on trips abroad with the school – there was a residential trip in year 6 that I couldn’t go on, and I guess we just went along with the advice from the headteacher that it’d be too difficult. I did get to go to France at the end of Year 7 though, which I loved but that was the only trip I went on. I’m pretty sure there was a skiing trip at some point, and whilst I cannot ski, well in the traditional way anyway, I’m sure I’d have liked to have tried para-skiing, or just been strapped to an inflatable doughnut an released down a mountain, whichever. But of course it wasn’t even considered that these kind of monumentous trips abroad could include a disabled student, regardless of whether or not I could ski. It would’ve been nice to go and watch and be with the other kids. Or maybe the trips abroad could’ve included more cultural adventures rather than extreme sports in order to make more events more inclusive of students with differing abilities.
The problem for mainstream schools though, is that disabled students are always the minority. So any resources and funds put in place in order to make subjects and extra-curricular activities available to all students, probably get forgotten about. Imagine if schools had a clunky old racing wheelchair, or a stool for people to sit to throw a javelin, or students’ classmates all got excited at the idea of racing their paralysed classmate down a snowy hill in toboggans. Everyone has to put up with past-it sports equipment, almost chopping their fingers off whilst using an electric wood cutter, and getting homesick whilst away with school, it shouldn’t be any different for disabled kids in mainsream education.
I’d like to think that things are different now than back in 1998 when the internet was too young for new ideas to spread and attitudes didn’t change as fast as they can do now. If you’re the parent of a disabled child, please don’t settle for being told your kid can’t be the next David Attenborough just because the curriculum might contain things they’ll find physically difficult or even impossible. Insist that they change what can be changed.
I completely regret not having been able to study Geography, I loved it for the first three years of secondary school and I know I would’ve continued to enjoy it. I’m fascinated by our world and how it formed and is still changing, and that 12-year-old girl who was really proud of the cardboard model showing gradients of hills, really wishes she could’ve had some of the same adventures as the rest of the year-group when it came to exam years.
If you’re a teacher or a headteacher, or a head-of-department and you think there might be parts of the curriculum which aren’t within every student’s grasp, you can change it. And if you’re another disabled kid just like me, don’t be afraid to ask ‘why not?’. I didn’t, and I wish I had.
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.
Well firstly I mean, is it really necessary? I’ve only just got over having Bertie the class bear to stay for the week in October half-term. They’ve only been back at school for about 6 weeks after having just had 2 weeks off and loads of presents and chocolate, I actually think being at school is a break for them. Calm and routine and less chocolate and movies. And they listen to teachers. They don’t bloody listen to me. They don’t even work as hard as us, why do they get a week off ‘work’ to do everything else, where is my parenting half-term? I work a lot harder than my kids and I don’t get a break. It’s just unfair.
- It’s 5 whole days. FIVE. Surrounded by 2 either side of the 5 days. That’s NINE days. 2 days at a time I can handle, and by Monday it’s a beautiful thing to wave to your kids at the school gates knowing they have to listen to someone else’s voice for an entire day, asking them to perform tedious tasks. Comeuppance, I say.
- Any sentence from a 3 year-old which begins “Shall we play…?”. Clear your throat and get ready to say ‘NO’, before the 6 year-old gets a chance to respond.
- Any sentence from a 6 year-old which begins “Shall we play…?”. Clear your throat again and get ready to say ‘NO’ before the 3 year-old works out what the 6 year-old wants to play and responds unfavourably.
- The sight, smell or mear mention of the term ‘Play-Doh’. The devil’s belly-button goo. My sister just bought a set of the bastarding pots for our now 6 year-old, and she is yet to hear what I will do to her as punishment. I haven’t decided yet but it will be harsh and she will learn never to do that again. It might start with me smearing it into her bedroom carpet and bedding. When she has kids of her own and I get to buy them gifts, I will have the last laugh. (6 year old loves it, so that’s all that matters, apparently)
- The requests for food throughout the day. They begin at 6am when the 3 year-old requests breakfast literally as soon as her feet touch the bedroom floor, we try and hold her off for at least 30 minutes after which time she will sit in the kitchen for an hour, and eat precisely one spoonful of cornflakes. Snack requests begin immediately after being dressed. They don’t stop until they go back to sleep in the evening. Nobody can afford these kind of children. I exist mainly on tea and Aldi digestive biscuits so I don’t see why they can’t also.
- The sight of other peoples’ facebook updates, photographs and love for half-term. No one else needs to see how #soblessed your week with the little darlings is. Stick them in front of a movie with Nutella on crumpets and get over yourself.
- The sight of other peoples’ holiday photos which show that these people are just not good with money. I refuse to spend 300% more on a holiday abroad booked in the half-term week when I know that holiday destinations will be littered with other holidaying families taking up poolside loungers with more irritating children and their verrucas. If we decide to go on holiday with three kids, it will be in term-time and I will happily sacrifice their education for a week or two. I’d find court quite exciting too I think.
- Teachers who say “oh but children need a week off to chill out at home, they get so tired and really need it, and so do we”. THINK OF THE PARENTS PLEASE. If you care about these kids, you’ll keep your watchful eye over them so I don’t have to say “go to the bloody toilet then!” 13 million times a day. They’ll listen and pee on demand for a teacher. Also, if one needs a week off one’s job every month and a half, maybe one is in the wrong job? *
- When a child mentions “Mummy, can we do some cutting/painting/sticking”. RUN. RUN FOR THE HILLS.
- The weather. It always rains in half-term week. It’s the rule and it’s stupid. It means we can’t really go out and do anything because getting wet sucks. Kids are obsessed with wearing wellies and wellies are stupid because kids trip up in them and fall in puddles and cry. Wellies should be reserved for river-wading only, the house gets covered in streaky wet muddy marks, and then if we stay indoors all day somebody goes insane and it’s me, always me.
- Another half-term gem has to be the older ones waking up the 6 month-old one. He’s taken to napping for about 7 minutes, so on the rare occasion it approaches the 8 minute mark, if another child so much as exhales near him I will scream. And cancel Christmas.
- Needing to get out of the house to relieve the steam building up in your head through stress, but dreading the thought of walking through anywhere with other people when your 3 year-old will definitely shout out offensive observations at passers-by. Like for example when we walked past an older lady with water retention and the child exclaims “Mummy look, fat legs!” and you look, because you’re a parent and when a child tells you to look, you look, or they will shout louder.
So I propose to the schools of this country, or at least my daughters’ school, that half term consists of just 2 days. A Saturday and a Sunday beginning immediately after the last Friday of term. Then by Monday we can all be okay again and Mummy doesn’t lose her shit.
*Disclaimer: I know teachers work ridiculously hard and do amazing things for our children, despite the growing pressure they are under. And despite kids being arseholes some of the time, their teachers still encourage them.
Last week was one of the busiest I’ve had in a long while in terms of things regarding disability, and complaining which I enjoy doing.
On Tuesday I met with Marc Radforth from the German international trolley manufacturers Wanzl. He came down from the Midlands to meet with me in a local branch of British supermarket Sainsburys, who of course use their shopping trolleys. We talked about the current options when it comes to choosing and using a trolley to carry out your shopping fun, which is normally something one undertakes in a mindless fashion – person approaches trolley park, person selects trolley at the front of the queue of trolleys waiting in line hoping to be picked and taken for a spin, person turns trolley around and walks around supermarket putting items in said trolley. This is fascinating right? Please keep reading.
Sounds very simple and straightforward, and normally the only problems arising from trolley selection and use, are things like getting a trolley with a wonky wheel, and trying to insert a 3 year old into a tiny folding flap of plastic seating when they insist on not walking, and you’re not allowed to leave them tied up outside anymore. Then they moan about the seat being cold or wet or too hard. You try saying to them “What do you want, a bloody goose-down recliner and a pina colada?” You tell them children in third-world countries don’t even have such luxuries, but even that doesn’t make them feel guilty enough to stop whining. The problems don’t stop there though. Well for most people they do, but I’m not most people. My difficulties and needs don’t follow any textbook guidelines, even ones about wonky people. Usually wonky people are taken to a supermarket, pushed around and helped in their shopping needs, but if they happen to be a parent (really!) and wish to be a parent whilst going shopping, their child would have to be transported in a trolley/pushchair pushed by someone else. There are no options for baby/child-friendly trolleys for parents who also cannot walk themselves. Currently, my option is this: put baby+carseat in the raised-up ‘BabySafe’ trolley (I mean, someone else will do this for me as I cannot reach) and then other person pushes trolley around with my baby in it whilst I travel behind/in front/next to the trolley rather than being in control of it myself. Onlookers don’t know I am this baby’s mum and inside I’m screaming,’I know he’s cute, I made him!’
Wanzl read my Tweet about the trolley issues I have and got in touch with me. They said it would be useful if someone could meet with me to discuss my needs and possible future options. The good thing about a company like Wanzl is that from the meeting I had with them, it was very clear that they will go above and beyond the effort made by most companies to try and provide for all needs. But they can’t provide for this without someone telling them exactly what is needed and what is currently not available. We talked about the new lower-level Babysafe trolley that I found at Asda and Marc said that this style of trolley was re-designed with the help of people on Mumsnet where it was mentioned that the tray for the carseat was too high both to reach and plonk a heavy baby and carseat on, and also to see over. I have been witness to my PA who is 5’8″ crashing into a wet floor sign that she couldn’t see whilst pushing the trolley. Luckily it wasn’t a toddler. The base of the new trolley was also brought up so it isn’t so deep to reach into. These trolleys are currently in Asda stores, with Sainsburys and other stores to follow suit shortly.
The problem I’m having is that even with improvements to the existing carseat trolley, and also the provision of other trolleys for parents to slot children into (just any child wondering aimlessly will do but parents tend to provide their own) like these:
Or these with a typical toddler seat:
…I still could not have my child in the trolley that I’m pushing and be able to fit shopping in too. I often use baby slings but they’re not always practical when shopping. I get very hot whilst babywearing indoors and if you need to bribe your child to stop crying by paying them in biscuit currency once they come of age at around 7 months, then they need a place to sit. You might be thinking ‘isn’t there a trolley that attaches to wheelchairs?’, and you’d be right as these do exist at most large stores, and Wanzl have also improved these recently by making the attachment arms easier to operate for people who have problems with dexterity, like I do. Here I am trying out how these work and how I can indeed put a baby carseat in one of these trolleys. But it is unsafe as there are no straps, and although I have since tried this and know that the possibility of my baby falling out of both his carseat and the trolley is very low, that’s not what the trolley was made for and if we have an Earthquake in the foreseeable and he falls out of it, I’d very much regret using an unsuitable trolley. There isn’t a folding toddler seat either. And also, with a carseat/child in the trolley, there’s no room for my coffee grinder, my sledgehammer and my horse-riding jodhpurs to go when I’m shopping at Aldi.
During our meeting, Marc from Wanzl told me about a young man in Northamptonshire whose disabilities and requirements were so specific to him that they designed and manufactured a trolley just for him to use at his local supermarket (not sure what happens when a different supermarket has an offer on beer or something but that’s besides the point). So some companies are willing to help even if it doesn’t bring them mass orders and profit in return.
We came up with quite a few notes on what I would need from a trolley. A good sense of humour, likes long walks on the beach, that sort of thing. But mainly just a trolley that I can affix to my wheelchair and have my child sat facing me. Wanzl use ‘eye-contact with parent’ as one of the advantages to their parent and child trolleys, so it’s appreciated that the child needs to be facing whoever is pushing them rather than being strapped to the front of the trolley facing forward, like an unwanted teddy bear on the front of a dustbin lorry.
After the meeting, I went over to the local Morrisons store (and survived) to look at their kids’ clothes, and on the way into the shop I came across these
beauties monstrosities. They looked like some kind of torture chamber from the days when disabled people were brought up in orphanages because they didn’t meet the perfect-baby expectations when they were born. I couldn’t see any Wanzl branding on them, so they’re off the hook for now:
I’m looking forward to hearing from Wanzl following our meeting, and seeing what ideas they come up with. It probably won’t be the easiest trolley to design, but in my head it looks something like a trolley+baby sidecar hybrid. I know they are willing to help though, and that is very encouraging. Hopefully it will be something that can be mass produced and used in supermarkets all over. There aren’t many wheelchair-using parents shopping at a supermarket at any one time (if we all go together people freak out a bit), so each supermarket might only need one or two of these trolleys available, which isn’t too much to ask of Tesco et al, is it?
Moving on from trolleys (I won’t be saying the word trolley too much more I promise), the day after meeting with Wanzl, I met with Andrew Sherwood from Marks and Spencer (M&S) after my ranting blog, this one, where I discovered that the breastfeeding room at the Torquay store where one can comfortably sit and feed their baby, was not accessible to me. Or anyone wider than this gap >______< it seems. So I whipped one out in the kids’ clothing aisle and fed Rafe there. When I met with Andrew, we went and looked at this room and even he couldn’t understand why it was so narrow, but he guessed it might be because the architects were trying to fit multiple facilities in this room for all sorts of parenting needs. Just no wheeled people. But I have since discovered, in Sainsburys near where I live, a similar ‘change and feed’ room with a breastfeeding area that again, I was too much of a wide load for:
So it’s not just an issue specific to M&S buildings. To the person who was holding the tape-measure on these ‘refurbishments’ – YOU HAD ONE JOB.
Some good news from Andrew Sherwood, whose role is Property Development and Facilities Management (improving access and facilities in M&S stores) he has said that they are always trying to improve things for disabled people whilst shopping. They have, where possible, tried to keep baby changing and accessible toilets separate, rather than people who need to use an accessible toilet having to endure the smell of 30 festering toddler poos, and numerous door-knockings when a parent desperately needs to change their kid’s nappy and you just want to have a wee in peace. They have also made it so that, if they have the space for it, they will have two separate accessible toilets with one being a left-hand transfer and one being a right-hand transfer. This may sound trivial to the average toilet-goer, but when most of your limbs don’t work properly, and you find transferring from chair to toilet on the right easier than on the left, it is such a luxury to be able to choose which toilet is easier, rather than struggling in the one toilet provided by most places.
Andrew told me of the legislation and guidelines used when designing and providing facilities in buildings which should be adhered to by ALL architects so that people can expect the same level of ease wherever they go. As you can imagine, this is definitely not the case. I explained in our meeting that a common problem I have is that to be able to make use of grabrails and bars in accessible toilets, they need to be at a certain height for me to lift myself up on. And there are many places where I know I find it difficult to use the toilet either because the room is too small to turn my chair around in, especially if I’m with the kids, or the toilet is lower than it should be, or the grabrails are too high or they’re too far away. Just yesterday I was at a local hospital and went to use the toilet before my appointment and I couldn’t reach to lift myself up as the grabrail on the right of me was so far away:
I fully understand that this issue probably wouldn’t be an issue for the majority of wheelchair users, as many people have normal use of their hands and upper body. But I don’t. If everywhere was the same so it was equally as easy or difficult wherever you go, there wouldn’t be that unknown when you go to open the toilet door and get that feeling of “oh great, I really need a wee but I’m not sure if I’ll be able to use this toilet, I might have to wait ’til I’m home”.
I think the problem is that most companies think that as long as they have a toilet with a bit of space around it, shove a changing table in there and twenty thousand nappy bins and a grabrail randomly attached somewhere on the wall, and an emergency alarm cord tied up so it can’t be pulled by an inquisitive child, but is actually out of reach to those who might need it and is now rendered useless, then they have done their job by catering for all needs and nobody should feel the need to complain.
Well it’s rubbish, facilities are mostly crap and badly maintained and hardly ever cleaned so you can see last month’s pee dried on the toilet seat because fuck it, it’s not used that often to worry about. At least there’s a toilet with a wheelchair symbol on the door eh?
Knowing you’ll be able to go to the toilet or choosing a trolley that you can fit your kid in and go about your shopping trip should be the least of my worries, I shouldn’t even need to think about it beforehand like most parents. But I do, and it means I often can’t relax or be fully comfortable in most places. Hopefully someday soon that’ll all change.
For now, Andrew Sherwood has asked for the doorway of the breastfeeding room in Torquay to be widened so that I can use it. He is going to make their architects aware of this flaw in their planning.
You didn’t expect someone to be able to write over 2000 words about trolleys and toilets now, did you? Next time I might provide a photograph of one of my favourite accessible toilets with no wee on the seat. Something to look forward to!
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Photos of trolleys are taken from Wanzl’s website. Other photos are all my own.