WOW – I’ve got to speak in public!

Tomorrow, and the day after that, I have to speak in front of an audience. I say ‘have’ – I was asked and I said I would. Slightly wondering what on Earth I’ve got myself into. Am I going to be well out of my nervous depth?

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I am going to be part of two discussion panels at the WOW – Women of the World festival. Click the link to see the website and what it’s all about but, essentially it’s a festival celebrating and discussing all things woman – what women experience specific to their sex and gender, how perceptions of women are changing, what sort of power women have and how things that only women can physically experience, like childbirth or miscarriage, can affect both women and society as a whole and how these things are changing rapidly. Both for better and worse. It will be fascinating, to say the least, to be a part of this and also to be part of the audience for other parts. I love seeing how the way humans exist differs from culture to culture and I think I’d like to go to the festival even if I wasn’t involved in it. In the news today they are discussing how 1 girl in 10 in the UK doesn’t have access to appropriate menstrual products. How is this even the case in 2017?

I was approached by one of the lovely programmers who had read my blog, and she asked if I’d like to be involved in both the Birth Stories panel and the Disability, Women and Taking Action panel. I could’ve chosen to not take part, or even just speak at only one discussion, but both are so important to me and how my life is currently turning out that I felt like I should do both, or I’d really regret it. I’d kick myself if I was to watch someone else possibly with a disability talking about their experiences of childbirth, in the UK, and think that perhaps I could’ve added something worthwhile, or something people should hear (god that sounds knobbish).

Anyone who knows me probably knows that I don’t often partake in public displays of verbal discussion – I used to find any reason at all not to have to read aloud to the class in school, college or university, my mum had to recite the Brownie Promise* for me when I was a child because the idea of everyone looking at me while I spoke made me burst into tears. And although my partner and I will be getting married in the near future, the thought of being the centre of attention and then having to speak ACTUAL WORDS in front of a group of people gives me the heebies, and even the jeebies. I think I might get married in a cupboard. [*I’ve just watched some videos on YouTube of girls doing their Brownie Guide Promise and I’m a little freaked out at how archaic and cultish it seems!]

So tomorrow I shall be talking about my experiences of childbirth (involving my own children, I don’t quite remember my own birth). I LOVE talking, very openly about pregnancy and giving birth. That is when I’m only talking with one or two people. But maybe I won’t spontaneously combust and I will find some legible sentences from within, to talk about something that I love so much – giving birth to my own children. Giving birth as a severely physically disabled woman was always going to be a bit of a science experiment for me and I think for the medical professionals too. but it went surprisingly well compared to what I imagined it might be, so that will be my angle of discussion – The Science Experiment of a Disabled Woman Giving Birth (Star Wars font please) Hopefully, people will be able to hear me, I’m told there will be microphone technology!

On Sunday, I will be talking alongside more lovely ladies including Liz Carr (of stand-up comedy, disability activism and Silent Witness fame). We will be exploring how often it is disabled women who are left out almost entirely when it comes to the Women’s Rights Movement, and what some of the key battlegrounds are around being female and having a disability. This will involve talking about anything disabled women experience from education, healthcare, finding and sustaining a career and attitudes from people that along with millions of others, I experience on a daily basis. Something as small as a shop assistant addressing my PA instead of me is only the start of it. I think my angle for this talk will be about wanting my life with a disability to just be as easy or as difficult as if I didn’t have a disability. I don’t want to be seen as an inspirational person just because I have eaten toast for breakfast without crying about being disabled. Although come this weekend I may well be blubbing into my morning cup of tea.

I will update in due course with how successful this weekend was….. ahhh.

@shopgirlygm

Insta – @lizzybuntonvlogs

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I won!

I love sport.

There’s something you wouldn’t have expected me to start with. But I do. Well, some sports anyway. I am a great lover of Wimbledon tennis in the summer and I adore watching gymnastics, diving, swimming and athletics. I used to do gymnastics growing up from ages 6-12 and I also dabbled in wheelchair tennis in secondary school (it was hard to progress from dabbling when you are pretty much the only wheelchair user in a school in a small Cornish village).

But nevertheless, I think I would love to have nurtured some kind of sporting skill if my body had given me the chance, and the working nervous system that is quite fundamental to sporting victory.

But at age almost-31 I have just had my first major sporting success. The annual tournament is a family affair, previously revolving around a golf match (is it a match?) which took place at unsociably early hours on Sunday morning of the bank holiday weekend in August, and the women and children of the family occupied themselves with other activities for the day, such as making sandwiches and changing nappies until we all met up again when the golf was over and we’d have a big buffet-style tea in the garden of the previous year’s winner.

It is always lovely to see all the family in one place, and to try and remind myself of all the names of the great aunts, uncles, cousins removed, cousins’ children and second cousins etc (seriously, Great Granny, how on earth did you cope with six kids) and in recent years the sport has changed to a version of bowls (there are flags and string points markers involved but I don’t know what the actual name is. It just takes place on a bowling green with bowls balls so it seems appropriate to refer to it as bowls). Pretty much everyone in the family now gets involved, we are split into teams and play around the 8-flag course twice. Some members of the family already play bowls and so have an idea of how to throw the balls – they aren’t actually spherical and one side is weighted making it want to veer off to one side – but there is a handicap system in place allowing even novice players to be in with a chance of winning if they score highly enough.

But even with the handicap available, it still would not be a level playing field for me (insert bowling green pun here).

I have no muscle whatsoever in my hands and lower arms, any strength I do have has to come from my upper body, and the only way I can hold a ball is by relying on the tendon resistance in the extension in my wrists/hands (pictures to follow!). Even still, standard bowls are too heavy for me to lift let alone lob into the air (I mean, roll gracefully), so I play using two jacks, which are slightly smaller meaning my child-sized floppy hands can just about lift them. But even with this allowance, I would not be able to get the ball anywhere near the desired region due to my lack of strength, so I position myself about half way towards the post. Only then can I attempt to actually use some skill to get the balls as close to the post as I can, which is exactly what everyone else is trying to do.

I’m pretty sure my spacial awareness is slightly more ‘well-practiced’, than the average mum who doesn’t partake in a particular sport, simply because I have to use spatial awareness all day -steering an electric wheelchair through narrow doorways, or pushing a manual wheelchair amongst a room of small children and Duplo and trying not to break either. Also if I am trying to pick up a small item it takes a lot more concentration to persuade my hands into getting to the right place in order for something to hopefully fall perfectly and conveniently into my hands just so I can put moisturiser on my face, for example.

Well anyway, I am rambling. Cut a long story short, I won.

The family tournament which is in its 23rd year and is really a much-loved family tradition and something I hope my own children will still attend after I’m gone, I won. I scored 86 even without the handicap added, which I am most proud of. The coveted prize is my maternal Great Granny’s wooden walking stick which has been decorated with the winners’ names engraved on little silver shields since 1995 after Great Granny died.

We met at my Gran’s cousin’s house for a BBQ, feast, drinks and of course the awards ceremony. I knew I had scored quite well whilst we were playing but of course, I didn’t know others’ scores so when they announced my name as the ladies’ winner and overall winner it was a bit surreal. My first thought was “Oh shit. I’m going to have to make a speech”, and I hate talking to groups of people, and even more so when it involves speaking about myself. I’d much rather address the masses via computer keyboard where no one can hear my annoyingly quiet voice and see my awkward face. I sat for a few moments cleverly diverting attention to the kids who were playing with my prizes, all the while thinking “I’ve got to say something. They’re expecting me to say something. I want to leave now.”, but I managed a short, muddled and awkward little speech where most of what I said was trying to excuse my winning, and get across that I wouldn’t have had a chance against everyone else if I hadn’t been allowed use smaller balls and start closer to each post. Everyone clapped and congratulated me, my Gran’s youngest brother who organises a lot of it, seemed genuinely pleased that I’d finally won, after being close a few years ago. I worried some of the family might think I hadn’t really won, fair and or square but everyone seemed pleased. Tom was especially proud as was my mum who wasn’t there this year.

But most importantly, I won Granny’s Stick before my big brother.

@shopgirlygm

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 

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

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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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

facebook.com/haveyoutriedwalkinglately

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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