10 Things You Can’t Stand About Parenting 

Disclaimer: read ’10 signs you love parenting’ for if you need to be reminded that you do love it really.
1. When someone misidentifies the gender of your baby. You may like to think you’re quite a liberal parent and want to buy your girl a red truck for her birthday, saying ‘fuck you’ to gender stereotypes, but it’s still a little infuriating when your dainty little girl dressed in a blue dress and flowery sunhat gets told she is a handsome young man.

2. Mornings when you feel your stomach acid start to bubble up due to the rage caused by the amount of times you have to tell your daughter to not just stand there in yesterday’s pants for a further 23 minutes, but actually make movements – any freaking movements at all – to get some additional kind of clothing on. And also, when you ask what on Earth they’ve been doing for the last half an hour they seem to have no recollection of their activities. Astonishing. Like it’s been erased from their memory. Which reminds me…

3. Sometimes, they remember everything. Apart from important stuff. But they do somehow remember that last week you promised them they could have packed lunch at the end of this week, and now it is Friday, 8:27am and you now have an obligation to rustle up a nutritious picnic for the clever little thing.

4. You want to be a fly-on-the-wall at school lunch time and have the power to poke other kids when they say something mean to yours. You hate the idea that your daughter is sad and you’re not there.

5. Dressing babies. Due to my disability I can’t do this myself but I’m usually the one trying to pin said baby down while others try to insert him into trousers. They should use this activity to torture prisoners – see how long they last with a baby (okay maybe just a doll) who, just when you’re getting leg #2 into place, they retract leg #1. Leg #2 then becomes leg #1 and the ordeal is repeated about ten times. It’s the same with sleeves and shoes. You all end up screaming and you put your son in a dress and be done with it.

6. They do not want you to sleep. Babies are arseholes during the night and that’s all I have to say on the situation.

7. When you’re supposed to cook something nutritious to fuel their growing bodies but you’ve just got home and it’s 6pm – fridge tapas will have to do. You boil up some pasta, add cheese and a bit of sandwich pickle, some sliced up cold sausage from the weekend BBQ, and throw in some frozen mixed veg to pretend it’s healthy. They don’t eat it, and instead have some questionable yoghurt from the back of the fridge for dinner. If they get the runs it’s their own fault.

8. Meltdowns which occur outside the home. Nothing screams “look how shit I am at parenting!” than when your child decides to lie down on the floor in the frozen section in Morrisons. You’re a mum in a wheelchair and the verbal attempts to get your child to stand up are not working. Then the Parent Samaritans rock up and offer help and you just want to scream “You can fuck off too. Leave me alone.” in their face. You’d quite like to just ignore your child and leave them to their tantrum as you might at home, but unfortunately it is frowned upon in the public arena.

9. Morning wake-up calls before 7am when you’re not getting up early to go on holiday. I love that my kids want to snuggle in bed next to me in the mornings but when they are 3 and 6 years old, it is 5.48am and within 3 minutes they are arguing about not having enough space or any covers, you regularly scream “it is MY bed, it’s not even 6 o’clock, bugger off”. You load YouTube on your phone and some sickly sweet video of some girls unwrapping Frozen-themed Kinder Eggs, and send them on their way. You’ll deal with the post-YouTube comedown later on.

10. After all the other trivial, albeit shitty stuff that happens day-to-day as a parent, you have the overwhelming sense of disappointment that you can’t give them everything you want to. You can’t promise the world will be nice to them always and you can’t promise nothing bad will happen, and that sucks.*

*Although you can help them to be strong, loving and open-minded people, and that might help with those things.

@shopgirlygm

Access to life

Yesterday I wrote an article about Accessibility for DisabledGo, you can read the article below or click here to view it on their website.

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.

@shopgirlygm

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Sorry, those GCSEs are not for you!

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.

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The elusive Kynance Cove – Photograph by Hannah Blandford, one of my school peers

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.

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The cove last year, still being obnoxiously inaccessible. Photograph by Jolly Rogers, who has known me my whole life.

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.

 

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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Pimp my ride (my shopping trolley).

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’s ‘BabySafe’ trolley with generic European baby.

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:

Trolley with Trend baby seat.

Or these with a typical toddler seat:

Shopping trolley with folding 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.

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Here I am having the common knee-to-trolley-handle measurement taken.

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:

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Really helpfully placed over the metal bumper rail too.

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‘Pick me, pick me!’ it screamed. ‘No, you’re hideously awful’, I replied.

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:

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It wasn’t the most pleasant of nursing rooms anyway

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:

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It might look like nothing, but this makes it really bloody difficult.

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.

 

Yes, still pregnant 

Well this is somewhere I’ve never been before, this close to my due date. I’m supposed to have a baby in two days from now, but yet I still don’t know when it might happen. Maybe it’ll be tonight! Maybe my waters will break whilst writing this, or maybe I’ll still be pregnant in two weeks’ time. For someone who has somewhat compulsive time-planning tendencies, I’m finding each day and night rather stressful! 

I am getting more uncomfortable by the half-day. My ankles and feet are squishy and plump, fitting into only one pair of sandals. My wrists feel like they’re going to snap under the growing weight that hangs like a pendulum beneath me as I crawl from my bathroom to the bedroom. I can no longer get onto the toilet by myself and turning over in the night is a two person job. I cannot wait for this pregnancy to be at the point where it’s no longer a pregnancy and I get to hold the human that has been residing in my uterus. I can’t wait to see his face and who he looks most like. I can’t wait for the moment the midwife catches this slippery fresh baby and plonks him on my chest. I can’t wait to breastfeed and be the only person that feeds and comforts my baby in the way that only breastfeeding can, even if I can well remember the pain and endless crying sessions that is true in the beginning of breastfeeding any baby..  Or is that just me?!

I can’t wait for all of this. And yet, I don’t want this pregnancy part to be over. It’s uncomfortable and sweaty and painful at many times, but I still love being pregnant.

Everyone experiences pregnancy differently, and each pregnancy is different depending on whether it’s your first, second or seventh baby. But for me, pregnancy signifies a time where no one needs to take over any of the parenting role for me. It’s a time where I can be a completely independent mum, despite having never seen my child. As soon as he’s born, my role becomes much more complicated. I’ll be his mum all of the time of course, and he will know that, but I need more help in fulfilling the things no one thinks about as being what a parent does and even the crappy, less than savoury parts of parenthood. I’ve touched on it before and I’ll visit it again in a later blog after I’ve given birth, but I guess what I’m trying to put into legible English is the battle I’m having with myself over whether people’s opinions of me being pregnant and having yet more children matter, in the long-run. For some reason I’ve decided they do, because I care what other people think of me. Oops. And seeing as my decisions on how many times I have a baby affect other people, who provide help or make decisions about the help I receive, I can’t help but be affected by their opinions. 

I’m not talking about my mum being worried that I might not stop having children and my body will just start to implode in the face of the physical effects of pregnancy and childbirth, she’s just being a mum who is worried about her daughter, but of course with more specific concerns than  the average mother. (I promise I won’t have 8 kids, mum). If it’s at all noteworthy, I am equally concerned that one adolescent puppy isn’t enough for my mum and that she and my stepdad might become crazy dog people over the years now that their human kids have left the house.

 It’s the people who are going to be judging me and deeming me as selfish,  or as someone who is costing the state more and more each time my responsibilities as a parent change. But to those people I ask what their solution is – Should I have stopped after one child? Should I definitely stop at three? Should I not have had any kids in the first place knowing that I can’t change a nappy or pick a baby up off the floor? I know one of my specific genes has let me down at a significant time in my own development, but surely I have the right to pass on some of my not-so-crap traits, along with the very good genes possessed by my significant other, and together just be a normal family as far as we are concerned? The silly thing is though, that we’re a pretty independent family when we’re all together. We relish the evenings and the weekend days when there is no breadwinning day job to go to, and our time is filled with just us. No care needs. Just mummy, daddy and our children.  Just a normal family, doing normal family things.  

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Those pesky disabled people

I really am on the countdown now. Theoretically I have 5 weeks of pregnancy left, as I hit the 35 week mark yesterday. But considering I’ve never reached a due date with either previous pregnancy, I’m expecting it’ll be a few days short of the 40 week mark. I’m well aware there’s a 5 week ‘guessing period’ of due-datedness from 37 weeks to 42 weeks, ish. So I’m thinking I’ll start a sweepstake? So far in labour history I’ve got a 38+4 and a 39+3. Therefore I’m officially predicting my own baby’s gestation to be aboooout… 37+6… I don’t know why but I just think it might happen slightly earlier, or maybe that is just wishful, begging, desperate thinking as I’m SO uncomfortable.

Nothing fits. I even hate leggings and no one hates wearing leggings.

In the past few weeks I’ve had my first few belly measurements and they are consistently above average size, but still within the normal range. I’ve had blood taken again – which actually went swimmingly for a change because everything is swollen and I feel like I have Hulk-like veins. I don’t, but compared to how they normally cower within the depths of my skin so no medical professional can access them, it’s quite a treat. 

What else? Oh yes. We got engaged!  

Tom and I went down to Cornwall for our anniversary and shipped the children off to granny’s on the way (first time I’ve been away from them over a night or more, seriously!) and stayed in a hotel. It was brilliant, and very relaxing despite some completely inaccessible areas but we just worked things out ourselves, as we have a habit of doing. Tom carried me up and down spiral staircases to the posh swimming pool with staff watching, wondering what on earth we were thinking. We’re not stupid. We couldn’t NOT go swimming, child-free! 

 

There were no accessible changing rooms either so we improvised by sneaking into the empty gym so I could change into my swimsuit top. Well actually, the changing rooms were pretty accessible but it was a toss-up between Tom coming into the ladies’ room and risk getting shouted at, as all men are obviously predators, or me having to go in the men’s and watch other, hairier men changing or dare I say it, ‘flossing’. Neither filled me with ease so I opted for the sneaky gym-change. I guess a disabled person needing access, and then a place to change just doesn’t come into consideration when they refurbished this old hotel building. 

Challenges aside, it was lovely to stay in a hotel and just be us, without small children asking for breakfast at 5.52am for a couple of days. My mum had that pleasure. We even took a drive-yourself boat trip in the bay. Again, we faced challenges with this before we’d even gotten in the boat, with the operators of the boat-hire saying they were concerned for my safety.  (We’re always being irresponsible and risking our lives). It transpires that their concern was more that I  might try and sue them… Apparently they “had one the same, before”, who tried to claim against them after they hired the boat, even though nothing went wrong. It never gets old you know, being referred to as ‘one of them’, those vicious disabled people. What are we like, passionately waving copies of the Equality Act around and sueing people left, right and indeed centre. 

See look, I survived the trip. And I’m pretty sure Tom was quite comfortable with me being in control of the boat, just look at his calm face. In the evening following the boat ride, I decided I might be in labour- I was having Braxton-Hicks contractions, which I’ve had throughout all pregnancies but these were every two minutes and getting quite uncomfortable and slightly painful. We finished our restaurant meal and went back to our apartment and after sitting in bed for a while the pains eased off. Tom then decided he’d quite like to marry me, and conveniently he had a ring in his pocket and so the evening got a lot less stressful! Although before that moment Tom was imagining having to propose in the labour ward of the nearest hospital. 

It was the best weekend. 

So as far as birth preparations go, I’ve washed babygrows, bought some, but not all things for my hospital bag, and discussed a few birth plans with my midwife. It’s mostly a waiting game now.

It’s all getting very near…

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