No, she is not a child carer

Yesterday, I had to take my 6 year-old daughter to A&E because she had hit her head at school and cut it open. On the phone to the school receptionist I was told they’d called an ambulance because her behaviour had changed and she was very pale. I panicked, and left work as quick as I could, bursting into tears as I went down in the lift. What exactly did they mean when they said she had a cut to her head?

I got to the school ten minutes later, about 30 mins after she’d hurt herself.  She was very quiet and pale looking, and didn’t want to talk much. A teaching assistant was stood outside waiting for the paramedics to arrive, except nobody arrived, and instead the ambulance control centre rang my number an hour later, to triage her over the phone, wanting to speak to Amélie herself as well. She didn’t want to talk to the stranger on the phone, and he asked me more questions, then decided she didn’t need someone to come out to her and that we should take her to hospital instead. Quite why they couldn’t have let us know that an hour before, I don’t know. Anyway, we got to A&E and were seen by a triage nurse relatively quickly, and then by the doctor after another wait. But it was a nurse practitioner who saw my daughter after the intitial consultation by the doctor, who said something which frustrated me. I had been quite relaxed after getting Amélie to hospital and knowing she was in good hands and we knew what was going to happen. But the nurse practitioner asked Amélie a few questions just to check she could remember things ok and she was otherwise well after the head-bashing. One of her questions was about at home, and whether she  ‘helped look after Mummy’.

I see. So we went from ‘aww poor girl, she has cut her head open, let’s make her better’ – to ‘aww poor girl, she has cut her head open AND she MUST be a young carer as well, brave little thing’. She asked me if Amélie was a young carer to which I replied ‘no, she’s not’, and she said ‘no but I’m sure she has some caring resposibilities to help you, do the school know, are they aware she is a young carer?’, and so on. She told me it might be good, for Amélie, if the school were aware she might need to help me sometimes.

SHE IS NOT A YOUNG CARER! She is a 6-year-old little girl who happens to have a mum who’s in a wheelchair. The school know me well enough, and they also know I have a very caring and supportive partner who works full-time, and I have a PA who, surprisingly, fulfills the role of ‘helping Mummy’ when I’m not with my partner. My PA was sat right next to me at this point. My daughter doesn’t need to look after me.  I look after her.

Yes, she is able to fetch things for me and she can grab her baby brother out of the bathroom when he’s gone to explore the toilet, but as far as I’m concerned that does not constitute a young carer, who needs keeping an eye on to check she’s managing her complicated life okay.

If I wasn’t a wheelchair user, I’d still get my kids to fetch the baby wipes when I can’t grab them, or to run and close the stairgate when their brother is about to venture upstairs, and they are nearer than we are. I know able-bodied bodied parents that are lazier than us!

It makes sense to get kids to be helpful in their day-to-day life, and know that it’s just a nice thing to do. I hope they are helpful to their friends and teachers alike. My kids are pretty independent too, possibly because I can’t do everything for them that most mums can and  although daddy takes care of most of the physical side of childcare when he’s not working, I think they’ve learned useful tasks earlier than most kids would happen to. Amélie makes cereal for her and her sister, she can make drinks and loves that she can make her own sandwiches when she wants to. She has even taken to flying unaccompanied to Spain for a weekend get-away once a month in a rented villa she found, whilst backpacking in her gap year between nursery and primary school. She really needs the respite from taking care of her entire family.

Of course I’m joking, but on a serious note she does not need to be my carer. Young carers are amazing, and what they do for their mums, dads and siblings should never be taken for granted. And indeed, they might need someone to check-in with them every now and then to make sure things are working and that they have time for themselves. But I have my own PA, so that won’t need to be the case with our children. They’re just regular children and until I’m old and losing it, they can have their childhood.

I think the nurse practitioner may have realised that she’d gone a bit too far with her assumptions, as before Amélie had her head stitched up, she came and sat next to me and asked about my ‘medical history’  (like every parent in A&E with their child gets asked, right?!) and said that it was great that I just got on with life and that I wasn’t really disabled as I don’t let it affect me. She clearly hasn’t read this blog!

@shopgirlygm

facebook.com/haveyoutriedwalkinglately 

Has anxiety become fashionable?

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I appreciate this might be a risky article to write. Many millions of people suffer with varying degrees of anxiety, either for a short specific episode or a prolonged ongoing time. These people cannot help feeling anxious about certain things, it gets into the very grain of their being, day-in, day-out, and often therapy or medication is needed to learn to cope and manage the feelings and symptoms they exprience.

But lately, I seem to be hearing more and more people saying that they suffer or have suffered with some form or anxiety, for at least one stage in their lives. Maybe it is that these days, it is easier to ‘come-out’ as having anxiety, where it wasn’t before. It is widely known that people suffer from anxiety, depression and other brain-health disorders in silence, perhaps not even telling a doctor or family member through fear of not being believed, or being told to just “pull yourself together”. I say ‘brain-health’ as I truely believe and want others to recognise that mental health diagnoses are as much of a health issue as asthma or coeliac disease for instance. It’s just that although you can’t necessarily ‘see’ the problem, it is physically just as present as many other diagnoses. The problem is that if someone hasn’t suffered themselves, or there isn’t a blood test to cofirm the issue, then people struggle to believe it is most definitely happening, without the choice of the person it is affecting.

I might be one of the many who chose not to let-on about the anxiety I was experiencing after having a baby. I have three children and each time, I have treated the anxiety in different ways. With baby #1, it came as quite a shock. It was, I guess, part of post-natal depression to have anxiety like this. After having my daughter I’d feel so incredibly tense and frustrated by my lack of physical ablities due to my CMT neuropathy, that even though I knew exactly what my hands/arms could and could not do, I became severely affected by the thoughts of other peoples’ perceptions of my parenting and also about having to ask other people to do so much for my own baby. After all, nobody would do things exactly like I would if I could. I focused and obsessed over tiny things that were ‘wrong’ and everything seemed to make me want to lock myself in the bathroom and not have to ‘parent’ in front of others, especially those who knew me. With baby #2, I suffered simillarly for a few months before finally going to the doctor 4 months postbirth. With baby #3 I had the foresight to think ‘well this is probably gong to happen again isn’t it’, and even though I was absolutely rubbish at just sayong “hey, this is how crap and anxious I’m feeling”, people were aware a lot earlier and I was slightly better at normalising it, for myself and for others.

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So has it become less taboo to talk of your own serious anxieties, and by that I don’t mean being afraid of cliff-edges or big spiders – I mean things that are completely irrational, unexpected perhaps, and most of all uncontrollable to an extent? Or has claiming to have a severe case of anxiety become a get-out clause, an excuse maybe, to get out of things you’d rather not have to do? After all, people aren’t supposed to deny your anxiety, are they?

Are some teenage girls who would rather not play netball in school and have an excusing note from their mum, undermining the true experiences of the 15 year-old with crippling body dysmorphia who would rather jump off a bridge than have to show their legs off to fellow students and teachers? Is she going to be told “sorry, everyone has to join in”? Shouldn’t we be more lenient about what they can wear, or is it one-rule-fits-all?

I have always hated having to speak in front of groups of people. I remember even as a 7-year-old in Brownies, the moment when you’ve not long joined the club and you have to say the ‘Brownie-Guide Law’, I stood there and started crying and my mum had to say the words for me. Suddenly the idea of all-eyes-on-me was horrific. Since then I’ve detested it, it makes me feel physicallt sick and I will go out of my way not to do it even if it means being the only one who doesn’t play a part in a presentation. I get red-faced, my eyes start watering and I lose the ability to make the right amount of eye contact. However I also know that other people have it way worse than me, and cannot even speak to a cashier in the supermarket for example. So should college lecturers and workplace managers stop asking people to speak up in a group, because many people might be ‘too shy’, when really it might be only one or two who are suffering some form of actual anxiety?

It is difficult really, because whilst more needs to be done to help support those of us who are genuinely anxious and distressed about things that we really would prefer to experience, should we really label more and more kids as having anxiety because they haven’t got many friends or don’t want to say lines in tbe school play, and should we make physical education less integral to the curriculum incase school-aged adolescents feel embarrassed wearing a sports’ kit?

There is certainly a fine line between knowing whether to help somebody through anxiety by allowing them not to do something which might mentally distress them, and just saying “you’ll be okay, come on, let’s do this”. I worry that it’s becoming ‘cool’ to say you have anxiety, similar to when people say “oh I’m so OCD”, when they admit to not wanting people to get crumbs on their sofa.

What do you think? Have you had true anxiety? How have you treated it, and who did you tell?

Yours anxiously,

@shopgirlygm

When the world seems awful

I woke up this Sunday morning distracted after having frantically called and messaged my Mum and stepdad last night to check they were safe after the BBC News app pinged up on my phone informing us of the London Bridge incident. They had been to see Depeche Mode at the Olympic Stadium that night, and seeing as I have little-to-no geographical awareness of where things are in London, I didn’t know if they were anywhere near there, or if anything else had happened near them.

It had become somewhat of a dark joke last year; everytime we heard the percussive ping of the breaking news headlines pop up on either of our phones, we dreaded hearing that another celebrity had been found dead in their homes, and secretly hoping David Attenborough was still alive and well. On Christmas Day at my brother’s house, we heard the noise-of-doom on my partner’s phone whilst we were sat round trying to answer the ridiculous questions of my brother’s Christmas Quiz, and I sarcastically piped up, “oh no, who’s died now?”, which in hindsight, isn’t the most appropriate thing to have said but unfortunately that is what I said. Tom took his phone out of the space between the sofa cushions, glanced at the lock-screen and replied, “oh no, I don’t think I want to say!”. It was of course, a notification to say that George Michael had been found dead, aged 53. We sat in shock for quite a while, discussing how bad 2016 had been for bad news, and for famous people passing-away and wondered how many more faces would be talked about in the past before the year was up.

But of course these are individual people and most of them died by either natural, drug-induced or suicide related reasons. It was achingly sad to hear about Bowie and Prince’s passings and even those who I did not personally know much about. Not many high-profile deaths come as good news. However when the news is of yet another terrorist attack on a city, or a nightclub, a famous building or even just a bus, the thing we want to hear next is that the police have caught and ended the lives of the perpetrators. The lemmings, blindly and irrationally following commands of their cowardly leaders who are intent on spreading hate, ruining the lives of people who have nothing to do with them. All in the name of an imaginary being.

It is scarring and scary, and we don’t seem to be able to do enough about it. I know that  sounds monumentally defeatest but there is internet, there is print, there is travel, there is free-speech and there is unstoppable influence and these things can be, and usually are fantastic tools for movement and for good causes. But people will continue to follow blindly and be brainwashed as they have done for thousands of years. Years decorated by the untimely and unwarrented events to blame for the sudden decline in a specific population going about their daily lives. These foolish few will continue to be able to buy household products and make bombs that could kill innocent people enjoying a pop concert. I hated having to write that last sentence, but can we actually say that anti-terror movements and procedures will mean that this NEVER happens again? No, we cannot. We can’t control people and monitor their every movement, and that is frustratingly fair and right.

However we can one-by-one teach our children that they have their own minds. They can question and they can have good powers, just as forceful as the preachers of evil ideology living out their anger-filled desires through impressionable young people. We can wrap our kids in bubble wrap and not go and visit the local music festival because we are scared it might be a target for attackers, or we can pop the bubbles in the plastic, rip it off, stamp on it or whatever floats your boat and allow them to see, to hear and to be brave. They will see or hear about more terror attacks, as will we, and I will still frantically try and contact my loved ones if the attacks happen in a place near to them, as my family did when I was due to travel on the Picadilly Line on the morning of the 7/7 bombings with my stepsister, but thanks to her friend being a little too hungover to get up as early as we had planned, we were still in bed when it happened.

I am scared. Scared that it will happen near us or our beautiful children and family members elsewhere. But I am also scared that the fear of it happening will stop us from living our lives. So I think we just have to let the fear subside just enough, and teach our kids that they are brilliant, and brave and powerful and they can do good, have good values and good morals just because they want to, as opposed to needing a god or other source of scaremongering hierarchy to ‘make them behave and be good people’.

 

@shopgirlygm

The morning routine with three kids

I sit leaning over the sink with a mouthful of white foam shouting “HEEF HIME!!!” as loud as I can whilst trying not to spray toothpaste everywhere.  The children do not respond to such demands. It is playing time, not heef hime. Brushing their teeth is really not important right now, they have still got to dress Supergirl, even though she wears the same fucking outfit every day and she’s only just been undressed.

“HEEF HIME…HAN ANYONE HEAR NE?” That’ll be a no then. I spit out the remaining toothfoam and shout even louder, well as loud as I can with my croaky morning voice. “HELLOOO? WOULD ANYONE LIKE A BISCUIT?”

“ME!! I WANT A BISCUIT!” come the stereo replies as they elephant up the stairs still without shoes or socks on, despite having been downstairs to finish getting ready for a whole 9 minutes.

“So you can hear me! I am pleased! You’re not having a biscuit though, I was just checking your ears worked properly, which I have concluded they do, so here you are. Now brush.”

Two faces look at me like I’ve just cancelled Christmas, and I feel smug. I win. They do not. The older child then finishes brushing her teeth and goes for a lie down on my bed. That’s normal isn’t it. I finish brushing the younger one’s teeth and wheel into our bedroom to see the 6 year-old looking rather relaxed amongst the unmade bed, and I feel it is necessary to question her whereabouts.

“Why on Earth are you lying down in here? Are you finished getting ready? Have you found your shoes from the depths of the shoeboxfromhell? [They are actually on her bedroom floor in clear view of the doorway from where I saw them, but I want her to discover this for herself] You haven’t even got any socks on. Then you need to brush your hair.”

The younger child then feels the urge to perform her ritualistic hand-grabbing involving her baby brother who is crawling around in their bedroom, unaware although, really fully aware that doing so will mean he falls on his face.

“LEAVE him alone please. If he’s crawling you can’t just grab his hands, how many times do I need to tell you that nugget of information?”

“Ohhhwa. Don’t want to.”

“‘Don’t want to’ what? I haven’t offered you anything, I have told you to leave him alone or he’ll get hurt. You really need to go and find some shoes now.”

Younger child then seems to melt into the bedroom floor, flailing about like beached octopus, ensuring her feet go very close to her brother’s face, enough for him to try and eat her toes, at which point she shouts-

“NOOO, GET OFF MEEEYUH”

You’re on him! You get off, just stand up and he won’t be able to eat your feet and then you will be able to choose yourself some shoes, that’s handy isn’t it.”

I sit near the door frame incase I need to bang my head against it. Older child is standing next to her shoes and does not know where they are.

“Look down.”

Child looks down to discover the elusive shoes that have been there for over 12 hours, and then grins at me with an alluring coyness that I do not find cute.

We eventually make it downstairs, ten minutes later than would be helpful and the sloth-like children have yet to choose a coat. The younger chid has decided to drape herself over the shoe box, definitely sure that she cannot find her other purple shoe. I wheel past her and glance into the shoe box and sure enough, the shoe is literally under her hand. Well no wonder she couldn’t see it, her hand had blocked it out from all vision and discovery. Understandable.

“It is right there. I can see it. Under your hand. Lift your hand up. The other hand. *Oh for fuck’s sake* The OTHER hand, you only have two. See, now put it on.”

“Why do I have to?” she ponders, at least I think that is what she says. It’s hard to tell what a 3-year-old is saying when her face is squished against the shoe box and the moaning tone of voice would seem like I’ve asked her to complete a 1000 piece baked-bean jigsaw puzzle.

“No no you’re right, you can of course go to nursery with one shoe on.”

“Don’t want toooo”

Mummy gives up, and plans a mental timetable by which she will have consumed the children’s Easter egg chocolate before the day is out. They’ve brought it on themselves.

Follow me on Twitter @shopgirlygm and Facebook.

The new addition to Trolley-hood

From one tweet after this shopping trip:
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To this:
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The wheelchair-parenting trolley is now established at Sainsbury’s Paignton! Make sure you share and tag any parents in wheelchairs (temporary or permanent users) who might need to make use of this. Hopefully other supermarkets will follow suit and these will be avaiable nationwide, and not just when people ask for one to be made. Keep the progress going by spreading the word far and wide!
Thanks to Wanzl and Sainsbury’s (Yalberton Road, Paignton) for making this happen.
#disability #parenting #accessforall #facilitiesforall #inclusion #shopping #disabledmum
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Being Mum: Rehearsal In Progress

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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.

@shopgirlygm

facebook.com/haveyoutriedwalkinglately

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.

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