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!



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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The thought-process of Breastfeeding.

So I’m pregnant. I’m excited, nervous and pretty overwhelmed. I think I’d quite like to breast feed, that’s what I will hopefully do but if not I’ll have bottles bought on standby, you know, just in case.

Meanwhile, a simple, quick and painless act called childbirth happens (in no universe EVER).

Aww look! My beautiful baby! (Tears, emotion, blood, tears, etc) I really hope I can get this feeding malarkey off to a good start. 

Okay, latching on. I’ve learnt a lot about this in antenatal classes. Nipple-to-nose, baby opens mouth wide, insert boob. How hard can it be? 

EXTREMELY BLOODY HARD. This baby is absolutely minute, she weighs 5lb 10oz and I think my nostril is bigger than her mouth. How the hell do I make this happen. Millions of women worldwide do this every single day, maybe it just takes a few attempts to get her to see just how irresistible my nipples are. Then it’ll be easy. “Strip her off down to her nappy”, they said on the postnatal ward, “she’ll wake up and be more alert and want to feed”.

She latched on! She stayed on for 76 seconds, I counted! It was amazing, I did it finally. We’ve cracked it. 

Okay it’s been 4 hours since she tried to fool us into thinking she’d feed. Nope, nothing since. I’m going to have to express by hand. How hard can that be? 

MY NIPPLES… I WANT THEM BACK!!! Where the hell have they gone! Oh no, wait, there they are, hanging out down there with my belly button since being stretched like a balloon being tied in a knot. But at least we have milk, all 1ml of it. Don’t drink it all at once now Amélie. 

Okay, you drank it all. I have nothing left to give now except my actual nipples, but you have no teeth so good luck with that.

Formula it is then. This feels so weird, I really thought I’d be able to breastfeed.

I’ve been home for 10 hours now and OH MY GOD MY BOOBS ARE GOING TO EXPLOAD. GET ME TO SAINSBURYS, THEY HAVE BREASTPUMPS…STAT. (Didn’t actually say STAT).

I am a cow. An actual real-life human dairy cow woman. I feel SO attractive right now. She has latched on a total of 5 times in three days, that is kind of progress. Right? 

I don’t want to give up on the actual feeding, what is wrong with me? My mum did this without problems, for a whole year. I can’t physically hold a bottle and a baby at the same time with my useless hands. This is going to be so difficult. I could keep on expressing but that’s a very tedious job where I don’t get much milk out and there’s so much else involved, sterilising, measuring, heating, none of which I can do myself either. The milk has come in properly now though, maybe it’ll get easier?

DONT TOUCH ME. I am fully aware that I have a sudden case of breast-Tourette’s but, bejesus this bloody hurts. I might instead saw off my breast with the blunt side of a bread knife and extract the milk that way, I think it would hurt less. Whose idea was breastfeeding anyway? Do not touch me either mini-child, your mouth is my nemesis! 

Okay yes, you need a feed again, I get that. Make yourself at home, left or right for you madam? I’d recommend the house breast. Would you like a taster before going for the whole thing?

She’s doing it! That’s the majority of the day now where she’s actually entertained the idea for a substantial amount of time and fed from me properly. Does this mean she’s exclusively breasted? I think it does. Man I feel smug right now.  I love this.

I hate this. It is 4.02am, we last met at 1.32am, that is not good behaviour. You CANNOT be hungry right now. Short sleep cycles you say? Stomach the size of a marble you say? Remind me why I signed up for this again. Oh yes, she’s right there in front of me staring at me with massive blue eyes. Then I remember all over again, why I chose to do this. Breast is most definitely best all round but this, is the one thing that ONLY I can do for her. I can’t change a dirty nappy, I can’t get her dressed and get kicked in the face in a miniature sock-battle or lollop around the room trying to soothe a grumpy baby. THIS is my job.

I have boobs and, well, what else are they for?

Okay tiny girl, you’re 15.5 months old now. It has become as much a part of our bedtime routine as brushing teeth and reading What The Ladybird Heard, but you are growing so fast and taking my nipples with you every time you turn to look at the TV whilst feeding. I love you very much, but I think we’ve done it now. Save some for your baby sister, who will be born when you are 2 years and 8 months old and I can start this all over again and teach you all about how brilliant boobs are. Months go by very quickly.


Photo copyright @tombunton

Talent Search

What are you good at? Singing? Photography? Teaching? Breadmaking? Egg and spoon races?

I’m still trying to figure out some things about myself, mainly what the hell I want to do with my life and what skills I can comfortably say I’m in possession of. I am soon to be returning to work, and so in a few weeks I have to be an ’employee’ again rather than a stay-at-home-mum and that partly excites me in that I get to be working again but part of me (a very much more substantial part) is dreading it.

Not *just* because my Thursday morning date with recorded episodes of Grey’s Anatomy and 24 Hours in A&E must come to an end (holding back the tears here), but I will have to spend whole days away from my squidgy Genebeeb and her beautiful cheeky face, and try not to start blubbering in work because I can’t hold her and sniff her head all day any more. I have to be working in a children’s centre surrounded by everyone else’s children all day instead of my own and that sucks just a massive bit.

I’ve come to a bit of a moment where I feel like I’m supposed to decide soon what I want to be when I grow up. It hasn’t happened yet and I’m a bit stuck. Stuck not knowing what my strengths are, stuck in a whirlwind of revolving interests, stuck trying to figure out what to do to bridge the gap between all that. I’ve got A Levels in Psychology, English and Photography, a degree in Broadcasting and postgraduate Early Years Professional Status… So you see there isn’t really a theme!

Most people I’m pretty sure, have worked out vaguely what direction they’d be happy to see their life going in by the time they are my age (twenty*something*seven). My mum has worked her way up the ranks in the local authority and education sector, she has suitable qualifications to support this, my dad was in the Navy for many years and still works as a civilian for the Navy, my partner and I met whilst studying for our Broadcasting degrees and his line of work as a video editor and content producer is both technical and extremely creative, both integral to a career in the field of broadcasting.

I just feel a bit lost, like I’m supposed to know what I’m good at by now, but I don’t. I have so many interests but my disability just rears its ugly head every time I entertain the idea of plotting those interests along some sort of career path.

I wanted to have children in my twenties. That is something I consciously planned as I did not want to risk not being fit and healthy enough in my thirties or beyond to be dealing with my own very young children, like others are more able to do. So having children at this time in my life hasn’t caused my career path to deviate as such… I just don’t have much of a career path to look at. I cannot express the frustration of looking through pages of job descriptions online and having the same thought as I look at every entry – I COULD do that job, I am qualified, skilled and passionate enough to be responsible for this role, but… – and then I look down at my hands (metaphorically, mostly) and realise, nope I can’t do that EITHER.

So since the beginning of this year and whilst on maternity leave I have been trying to discover my inner creative streak… It was hidden somewhere within me underneath a lot of sarcasm, cold cups of tea and soggy milk-soaked muslin squares. I first started making button jewellery, necklaces, bracelets, bag charms, and then for what actually happened to be my half birthday (entirely legitimate cause for celebration) I convinced Tom to buy me a sewing machine. It arrived the next day, and well…





Maybe I don’t need an official career. Just an ongoing supply of oilcloth samples, fabric quarters, thread and brightly coloured buttons and I think I’ll be set for life. Or at least until I have to return to my ‘real’ job in a month’s time. At the moment I am loving just coming up with ideas of things I can make for my children, and for my family, friends and their children.
It’s never going to be midwifery, or paediatric surgery, or Olympic athletics… But at some point in the near future, in between making baby dresses and quirky purses, when I’ve got over the fact that I cannot ever have the job I dream I have when I’m asleep and not disabled, I hope to find out what I’d like to do for at least a substantial part of my working life.

Thought I’d end that on a chirpy note there… Happy Friday!


12 ways to annoy a disabled person…

Part 1

Here is my semi-conclusive list of some things I often hear when people meet me for the first time, in whatever situation that happens to be. We all meet new people every day, some of these encounters are just a one-off and some of course are recurring to some degree. Let me know by the medium of comment if you can add any of your own or if you yourself are guilty of any!

1. “What’s wrong with you? (Closely followed by “why are you in a wheelchair?”) With the exception of very young children and/or the very elderly, this is never pleasant to hear from someone you’ve just met. So no, lady with the snaggletooth and delightfully twisted gold hoop earrings, we are not well acquainted and I have not felt the need to quiz you about your apparent dental and jewellery-accessorising disorder so please move along.

2. “You have no muscle in your hands at all? Oh my god if that happened to me one morning I think I’d wake up and be like ‘oh my god I can’t do anything!” – I kid you not. The lovely, albeit naive, nurse who took out a cannula needle in my hand after a recent CT scan said this to me as I had Geneviève sat on my lap trying to feed, while I attempted not to laugh out loud to this remark. She meant it in the nicest possible manner but yeah…thanks for the vote of confidence there professional caregiver.

3. I don’t care if you’re an elderly gentleman and I appear to be slightly in the way of the box you’re trying to reach from the cereal aisle in Sainsburys. Kindly do not take my chair’s wheels and handles as a handy way of shifting me a little to the left. Use your words. I don’t feel obliged to grab you helpfully around your waist when you are standing in the way of the gin. If you love Alpen that much, invest in some shares and just say “excuse me please” next time. It works wonders, I promise.

4. “How do you go to the toilet?” Is usually part of an interrogation by children, but over the age of about 5 and it starts to seem a little inappropriate to be detailing my lavatoire regime to non-adults. Unfortunately minors don’t understand sarcasm so my response of “I decide to wee at a suitable moment and, well, the rest is history” seems to just go straight over their heads. Which leads me onto…

5. “What level of help do you need with toileting?” …WORST. WORD. EVER. Say it a bit louder won’t you, I don’t think everyone quite heard what you just asked me. Even typing the word ‘toileting’ makes me want to punch whoever last uttered it to me. I don’t care if you work for Adult Social Care and are assessing my ‘needs’ (because apparently a complete stranger can make this assessment and subsequent decisions about help I can get), please now leave my house and I’ll ask for help going for a wee with whomever is going to give that help. Not you.

6. “You’re such an inspiration!” …I debated with myself over whether to include this as I have been told this by many of my closest family/friends/people who have ‘medically’ cared for me in whatever capacity, so they are exempt from this crime! It’s the people who have literally known me for 5 seconds, in a queue in a shop where I’m carrying my baby in a sling and therefore I have inspired a whole nation. Inspiring how? Inspiring people to me are those who are in good spirits battling serious and devastating illness or injury, or who have overcome particular emotional or physical poverty to achieve something monumental. I have never felt as if I’ve suddenly overcome anything specific (just the whole of my disability making my life impossible to get on with but that’s ok, I love it really!) No but seriously, save this title for those who really deserve it.

7. Telling your child not to “stare at the lady”. It’s like saying to a child that they can hold a bar of chocolate but not eat or look at it. (That analogy sounded better in my head). I am weird and different. Children like weird and different, go with that and use their interest in me or my floppy hands or my wheelchair as an opportunity to teach them about society, about the human race, illness, disability, whatever. Just don’t make me something they’re not allowed to look at or ask questions about. I joke about being interrogated by small children but on a whole other level it is crucial and I kind of love children for being such nosey little buggers.

8. Offering to help as you walk past me and Tom as we are loading our children in and out of the car. Thank goodness you were there just at that moment, I don’t know how long we would’ve been stood freeze-framed in a moment of obvious despair waiting for someone to step in. *Disclaimer – I am not an ungrateful person, but random strangers offering help just seems bizarre to me when we are clearly not appearing to struggle. And even if we were, a little bit of struggle is normal. It makes me feel more incapable and dependent than I already am. I don’t follow random people into public toilets offering my assistance to help them flush the chain. If I need a hand from a stranger, I shall holler!

9. “So will your children be like you when they grow up?” Again, I’ve known you for a matter of minutes and right now I don’t feel like we’ve bonded sufficiently for me to divulge that a)…no wait, just mind your own business! Will your children inherit your ignorance and awfully placed false eyelashes? I hope not. Disabled people, I can assure you, are already fully aware of what may or may not affect their children. I love talking about genetics and inheritance with people I am close to or have a reason to discuss this with as it is an honest and trustworthy relationship. I do not even know where you will scatter my family’s information, so, shoe…off you go.

10. “How do you, like, get into bed and stuff?” – I get into bed and stuff. Next question.

11. “Aww, you work here, really? Well done you! Good for you!” I know in your head you’re probably wondering if my workplace actually pay me or if they’re just giving the little disabled girl something to get out of the house for. But yes, I have a job, shocking huh.

12. I have a face, please use it! When I approach a reception desk in the paediatric department at the hospital with my daughter on my lap, indeed, it is entirely likely that I might be her mum. You may speak to me, and not the person pushing me. I’m one of those uber-talented people who can understand speech and respond thusly. Just watch me it’s magical.

This concludes …alot of moaning.

Disclaimer #2 I’m now slightly concerned that no one will talk to me out of fear they’ll say or do something to annoy me. But please just carry on as normal around me. It gives me something to write about. Please remember to take these things a bit tongue-in-cheek, we are and will continue to be grateful to those around us and me in particular.