The Inspiration Paradox

It’s a daily battle, being inspirational. Most days I get out of bed. I go to the toilet and get in the shower. If I fancy it, I also take the kids to school. Just to be extra super duper. However, I know that these kind of luxuries aren’t afforded to everyone.

I also have a job, which makes me a working mum. This takes the ‘inspirational’ up another level. The ironic thing is, however, that these ‘simple’ parts of life are difficult. Getting out of bed, getting showered and dressed uses up a lot more energy for me than it does for the average person. Lifting my arms above my head to wrap my hair in a turban makes my shoulders burn like I’ve been lifting 20 kg weights for 10 minutes.

Then there’s my job, which consists of sitting and working at a computer, talking on the phone etc. Not exactly physically strenuous compared to more active jobs, but exhausting, nonetheless. I deploy several “Disability hacks” to make my job easier (?) such as using dictation, and keyboard shortcuts. But really, I guess they help to create a more level playing field. I may not be able to type quite as fast as you, but I can probably dictate faster. (Sidenote, people typing fast on a laptop is one of my favourite noises) However. as the demands on the service I work for increase, so too does my workload, exactly as it does for everybody else in the team. I work with the best team of amazingly supportive people, by the way.

But the problem with living a life that is just so inspirational, is that when the pressures of work and life increase, the need to ask for help in any aspect, seems impossible. People like to get all giddy about the resilience of individuals with disabilities in their daily lives but, when it comes to the professional world or other aspects of one’s life, there’s a pressure to conform to conventional standards. The fear of being perceived as incapable often leads to a reluctance to ask for help in anything that you may have been able to manage before. I find myself living with the constant argument to prove myself to everyone, no matter what I’m doing. No task is too big or too much, I’ll handle it all. I daren’t say no, because that would mean I’m not capable because of my disability, not because there is simply too much to do in a given space of time. Have a baby? No, I’ll have three! See, I told you I could apply it to everything.

Be independent at all costs. If I’m going to be good at something, I don’t allow myself to ask for help or admit exhaustion because that must be because I’m disabled, right?! The battle to embody self-sufficiency, extends to many areas. If I think about it for long enough, I could apply it to pretty much everything.

It’s double standards, all the time. (The double standards I give to myself, nobody says these things to me, disclaimer) Always ask for help and don’t suffer in silence or burn yourself out. But also, do all the daily things that other people do, but whilst having a disability and therefore dependent on others, but don’t ask for too much help, or you will just be reinforcing the notion that disabled people are needy, incapable, and….. Just get on with it and be inspirational.

Fitting in

It’s funny how it has taken me until the age of 36 to feel like I have more autonomy in a job. More responsibility for sure, but being able to do significant chunks of my job independently is somewhat exhilarating.

My introduction to the world of working started, for me, later than it would for most young people. Firstly because I stayed in full time education until I was 23. After uni I did a postgraduate teaching qualification. Secondly because as a teenager in a wheelchair, I couldn’t simply get a paper-round or sweep up hair in a salon.

I was employed by the place I had my placement at whilst studying. Soon after, we moved house and counties, and I applied for a job in our new hometown, only to have to fight the powers that be into letting me start the job that I had been successful in getting, because a third party entity deemed I was not ‘fit enough’ for the job. The job that I wouldn’t have gotten if it weren’t for my teaching qualification. After 5 months they let me start.

I stayed for 12 years. But in those 12 years there were many a day where I felt like I didn’t have a purpose. I didn’t fit in. I knew certain people resented that I had a PA to assist me with physical tasks. Like I wasn’t pulling my weight. It became a game between their comments and my live-in imposter, telling me I wasn’t good enough, and me fighting them both. I found it hard to bond with people, like they never really ‘knew’ me, apart from a select few who wanted to.

I had 5 job interviews last year. Jobs where the application process was lengthy, not the kind of jobs you can just apply for with couple of clicks on Indeed. Applications which took a good few hours of deliberance, stress and a good helping of overthinking. I was hopeful about the first 4 interviews. Only to be told ‘We really thought you interviewed well, but unfortunately…’ It was exhausting. Every one of those jobs suited my skills and what I wanted. One of them was in the SENDco department of a secondary school. Ironically one of the reasons they gave me in the phonecall to turn me down was that I took too long to type something in one of the tasks in the 3 hour long interview, despite me telling them I found the keyboard tricky to type on and that I usually use dictation for lengthy word-processing…processes. Maybe I was just too awkward.

Then I interviewed a 5th time. It took about 25 minutes and I instantly fell in love. I wanted this job so badly. I also didn’t want to be turned down yet again. I prepared for the interview for several days, using the previous, failed interviews as ammunition for how I could do better. Noticing where I might have gone wrong. I wrote down so many examples of my skills and situations in which I could demonstrate and evidence how to use said skills.

They asked me different questions to what I tried to predict. Fuck. I had to think on my feet. Well, you know what I mean. The drive home consisted of me trying to comfort myself that I would keep trying, something else would come along if this didn’t work out.

A few days later, a call popped up on my phone. The conversation started in a familiar way if I remember, ‘we thought you interviewed really well…’ My heart sank a little until she said they’d like to offer me the job. I’m sorry, what now?!

I think I said something really knobbish like ‘Really? Are you sure?!’ Maybe I didn’t, but when I replay that call in my head, that’s the story I’m told. It’s been almost 4 months now and I’ve never felt so ‘normal’, supported and independent. Yes, independent. Like how a baby feels when they can finally spoon feed themselves. Like my disability is no longer a workplace hazard.

I still need help to do my job. There’s a lot of paper handling. And floppy hands do not make for good paper handlers. But it feels different. It feels fair. I feel like I fit in.

An achey mind.

It seems all too commonplace these days to talk about the stigma of mental health. It makes me hate the word ‘stigma’. That even the ‘stigma’ is in a shadow of its own. It’s health. Since when did mental health become so detached from general health? And why is it still so? We have spent decades, generations ‘coming out’ about feeling depressed or struggling with times in our life, or just struggling with everything daily. To say it’s normal doesn’t seem enough. It feels to me like everyone has these ‘struggles’ at one time or another just as often as you might stub your toe, get a paper cut or have a headache. But those occurrences aren’t frowned upon. They don’t cause people to look at you with a tilted head and ask if you’re really ok.

I don’t even know where I’m going with this. Bear with.

Despite all of this, I am and have always been a bit ashamed and afraid to talk about my time with…. [Just type it Lizzy] postnatal depression. Or just depression in general and, anxiety. Another word which has grown it’s own mould of misunderstanding.

I say postnatal depression, not because that’s the only time I’ve been ‘there’ but because that was the time I acknowledged it. It felt ok to say I was feeling this way because I’d recently had our second baby and then our third, and really it was right from the beginning of being a mum. That way there was a cause and a likely end. I’d ‘get over it’. And then people would never know. But in truth, I don’t think I ever really have or ever will ‘get over it’. And whilst I have days of self-loathing, largely in part caused by my disability but not always, I also have days or sometimes shorter moments where I can’t deal with the kids’ arguing or think I can’t do as much as other mums do, and think “what the hell am I doing with 3 kids, I’m clearly not doing a good job as all I do is shout at them or nag them”. And everyone I speak to in a similar morning-school-run-hell situation feels the same. Then I take a step back and try to see things a different way.

And that’s just how things go, some days and weeks are easy and there aren’t too many moments of this kind of mood, and some weeks it is harder to see light at the end of that tunnel, which can feel never-ending. I know situational ‘life’ issues get in the way – trying to sell a house, trying to buy another, thinking about jobs, schools, children, family, friends, and everything else gets in the way of those easier smooth days.

And I know that everyone feels like this at times, even if they aren’t ready to talk about it yet. People feel it differently, some people feel it as a problem and some people take it as the norm. And in many families, mine included, talking about low mood is still a taboo. I’m getting better at it, I think we all are slowly. Even certain family members which I never expected to open up about such things have done.

I don’t often talk about anxiety, either. I think for me that’s even more heavily entrenched in my disability. Constantly worrying and guessing what people think of me and what conclusions they are leaping towards, and I can’t be 100% sure so then I can’t stop them landing there. It’s spending my life feeling like I demand too much of people and that I should just sit and be grateful. It’s buying clothes 2 sizes too big so I don’t feel too fat. It’s the constant imposter syndrome. It’s also just worrying about every little thing, any family member with a headache has a brain tumour, every time one of the kids trips up it must be CMT, every phonecall from my mum is to tell me something bad has happened. Sounds ridiculous doesn’t it.

It’s also important to know what helps when these things crop up. I know for me it’s calm days, or getting into bed at the end of a long day and lying on Tom’s shoulder watching a crappy [brilliant] series on Netflix, or taking the dogs to the beach watching them race each other, or making a coffee from your machine that has an impressive froth on top, because you’ve got your normal coffee beans back after they were out of stock. It’s tracking Tom on my phone to see that he’s nearly home, and not stuck in traffic, it’s watching my daughter in her gymnastics competition, it’s finding something from a clothes shop that actually fits my body, it’s seeing my family, it’s going out for a drive, it’s showing the kids my favourite music videos. There are things that help and there are things that don’t. Like not being listened to, or being undermined by people who should know better, or wanting desperately to do something but knowing that it’s my disability stopping me.

Anyway, today is apparently World Mental Health Day. Or just another day to acknowledge that our brains are just another organ in our body, but also the most special one. The one that gives us love and talent and compassion. We don’t need to pretend they don’t let us down once in a while. We don’t need to be dishonest about having a bit of an achey mind.

CMT Awareness Month UK

Have disabled students got more choice in 2021 than I had in 2001?

I have touched on this subject before, and each time I go to properly write about it I almost shock myself with how ridiculous this all sounds. I’m 35 years old, and so I was a secondary school student in the early 2000s.

Most people in the UK are aware that a teenager make your GCSE choices in year 9 ready to start the coursework and exams in year 10 and 11. Maths, English and Sciences are compulsory usually, but you get a choice of other subjects such as – choosing a language, choosing two forms of design subject such as woodwork, metalwork, food technology, textiles and art, computer design and a choice of humanities including history, geography and religious studies among others. You can also choose to study Physical Education for exams. So when it came to making my choices, I did the compulsory three, I also chose French. That’s pretty much where my choices ended. Despite studying electronics, woodwork, other design subjects, geography, a and doing some forms of exercise such as physio and occasionally swimming, I was not allowed to choose any of these for my GCSEs.

Why was this? Because my school didn’t run these subject? No – other students were quite free to choose these for their GCSEs. In years 7, 8 and 9 (the first years of secondary school for my non-UK friends) I studied all of the subjects with my peers and where I needed support physically such as holding tools or holding something still, lifting something or opening packets, I had the help of a support worker. This didn’t mean that I wasn’t doing the creative side or making my own decisions and carrying out the work – just that I needed some help where my hands and arms failed me, and also where the school failed to provide much in the way of adaptive equipment. So when it came to choosing your exam subjects, their argument was that I couldn’t choose those design subjects because I couldn’t carry out the coursework or projects independently. Of course I couldn’t. But why should that stop me studying studying the subjects for GCSE level? The ironic thing is, if I had been allowed to study the other design subjects, I could have designed my own adaptive equipment, taylored precisely to my own needs. Instead I was limited to only doing food technology and art – bizarrely, both of these subjects I also needed help to study. I couldn’t lift a bag of flour, let alone lift a hot baking tray out of an oven. And as far as art was concerned – I even remember my support worker trying to make an extension out of a piece of card rolled into a cone shape so that I could hold an oil pastel more easily, as they were so short and fiddly for me to hold. It still didn’t really work though – as soon as I pressed too hard, the pastel pushed itself up inside the cardboard. Don’t get me wrong, I enjoyed art and food technology – but I would have really enjoyed studying and being creative in the other areas of design.

Is that all? No.

Age 15, roughly.

Geography – this is where it seems to get just utterly and ridiculously unfair. At the time, we were told that it would be too difficult for me to study GCSE geography because the coursework revolved around school trips to Kynance Cove, a small local beach which is, like many parts of the Cornish coastline, completely inaccessible to most wheelchair users. By that time I was using my wheelchair more often during the daytime but I was still able to walk a little. But trips to this location would no doubt have been difficult and caused me to fall. I don’t suppose they entertained the idea of perhaps moving the coursework location to somewhere else – even just for that year – but really, they should have changed it for good, or made it so that there where ways that disabled students could have access to the beach as well. When asking my mum about this recently, she has no recollection of being asked about this or informed by the school that I could not study geography GCSE. However, I distinctly remember being quite annoyed that my two remaining humanities subjects were history and RE. I really didn’t want to study religious education, and the school trips involved to complete coursework, where to a tiny church nearby, where the 20 or so students could barely fit, let alone me in my wheelchair.

Surely that’s all? Alas, no.

Age 13, I think.

It seems fitting to write about disability sport as we have just watched the 2020 Paralympics in Tokyo. However approaching the turn of the millennium, when I started secondary school I remember feeling very proud in my new PE kit which included a pleated tennis skirt and top. I had never worn anything like that and felt great, if a little self conscious wearing it. I knew that doing PE in secondary school was going to be really exciting – there were proper sports like long jump, javelin and running. Neither of which I could probably do very well as a wobbly kid with CMT but I was looking forward to discovering what else we’d be trying, and knew it’d be a stark difference to doing PE in primary school in an itchy black leotard with your knickers hanging out the sides. but lo and behold, just after I started secondary school I remember being told that I wouldn’t be doing PE with my classmates. My sport would be doing physio with my support worker in the disabled toilet/shower room which also housed a medical bed. What a lucky girl I was – when everyone else was outside practising sports I was inside practising my knee stretches. even at the age of 12 I remember thinking “what a waste“, because I couldn’t wear my new sports kit. A couple of years later my school sports progressed a little, and that I was able to go swimming to a local small hotel pool with my support worker once a week. So that’s what we did for a few consecutive weeks. I was actually quite it good swimmer at that age, but at no point did anybody from school ask if I wanted to pursue it has any kind of sport – it was more something that I could do whilst everyone else was doing their sports. There was no exam, there was no checking if I was improving, and there is no prospect of somebody coaching me. At other times, it was just me and my support worker chatting has she rubbed my feet and encouraged me to squeeze harder in my quad muscles. I don’t wish to take away from my support workers effort, and what they did for me, but it wasn’t what everyone else was doing.

What I suppose his most concerning about all of this, is that at the time happened it didn’t seem unusual. I did my physio as I was told, for a while I went swimming with my support worker and I completed my religious education, history, art and food technology GCSEs (along with all the compulsory and language subjects) and that was that. There were no questions asked, there was no seeing what I wanted out of all of it. And, it wasn’t like I was the first disabled kid in the school. I went to a rural secondary school in Cornwall, which was often the secondary school of choice for kids with a disability as it was smaller than the larger school in my hometown, which was full of staircases and hundreds more children. There were several other children in the school with a variety of different physical and learning needs. This was not a case of the school not knowing how to deal with my disability. This was a case of a lack of effort to put changes in place to allow me to study alongside my peers.

Would it happen these days? It’s not even that long ago. It’s not like we’re talking about 1970s or 1940s or something, this was in the 21st century let’s not forget. At the time, attitudes to my disability amongst others felt pretty progressive. So how come I missed out on so much of my education purely due to my disability and how come we didn’t know we could do anything about it?

In researching for writing this piece, I had messages from other disabled people who had similar experiences. A fellow disabled mum called Jackie, told me that when she did GCSE Art she had to be in her own exam category as the other students were required to make wire sculptures, and of course she couldn’t do this unaided, so was segregated from her perrs. Her mum even had to pre-chop food for her to bring in for food tech class – surely this is the kind of reasonable adjustment that could’ve been made by the school, giving her somebody to chop the food for her. It does not negate from her knowledge or skills in cooking.

I wonder how many more students like Jackie and me in years gone by and even now have been held back from studying subjects which they might even be passionate about, but due to a disability cannot physically complete without support. there has to be some logical thinking here – A student receiving physical support or equipment is just as eligible for the qualification or certificate than their peers who don’t need the support.

Let’s normalise not wanting to be disabled (all of the time)

I often feel guilty being part of the disability community, whilst also feeling like I wish I wasn’t disabled, or as disabled as I am. Is that wrong? I hope not.

I wouldn’t want to be able bodied and be a completely different person either. I am who I am because of my disability. Also, Blogs and Instagram are funny places – you have to be careful how you word things, I have re-written this several times as what I wanted to say would come across in completely the wrong way.

I get that it sounds like internal ableism but can’t I just sometimes wish my body was able to work better? Just for myself?

The new addition to Trolley-hood

From one tweet after this shopping trip:

To this:

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

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

Sorry, those GCSEs are not for you!

I’ve thought hard about writing this piece. The last thing I want is for it to sound like a disabled person droning on about something unfair that happened to them as a child or growing up. At the time I didn’t realise quite what it meant, but in hindsight, some people made some very unfair decisions.

You’re 14, and suddenly you have to choose your GCSE subjects (these are the compulsory exams children take in schools in the UK at age 15-16 that determine what college *high school* and subjects they can take in post-16 education, which subsequently determines which degree subject you go and study for, which in turn is likely to determine the kind of career you might go into) it doesn’t always work out quite like that though, and your career may have nothing to do with the subjects you chose to study as a teenager. Normally we might choose between languages like French, Spanish, German and Latin, between humanities like History, Religious Studies and Geography, and design subjects like Art, Food Technology, woodwork, electronics, metalwork and graphic design for example. Subjects like Maths, English and Science are compulsory, which is a good thing, although I’d like to think in the future young people would appreciate their free education at a young age enough not to feel like they’re being ‘forced’ to study for a Physics GCSE.

When it came to choosing my own GCSEs, there was a conversation which I think went something like this:

Head of Humanities: “Elizabeth, as you are aware the coursework project for Geography GCSE takes place, as it has done for many previous years, at Kynance Cove. This is a very rocky inaccessible beach, so basically you won’t be able to do the Geography GCSE”

Me: “…….um Okay…”

Or words to that effect. I guess that wasn’t really a conversation though, was it? Like I said before, I didn’t really notice what had just happened, at age 14. I had just been told that I wouldnt be able to do an entire GCSE because the couresework involves trips to Kynance Cove, which is beautiful I hear, never been there though personally. So given that we had to pick two humanity subjects out of three available, there wasn’t much of a choice. There wasn’t a choice at all, I would have to study History – The Industrial Revolution – and Religious Studies – not even one of the pretty colourful religions either, just Christianity and its musty damp churches. I think we only went on one school trip for RS, to visit a ridiculously tiny Church that I could barely move around in. And I do appreciate now that the Industrial Revolution was quite, um, influential and important, but at the time I wasn’t particularly bonded with the subject, although I do have the name ‘Eli Whitney’ and his Cotton Gin forever etched in my memory.

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

That wasn’t the end of the story though. When it came to the design subjects, I was told I wouldn’t be able to pick anything except Food Technology and Art, as the other subjects were too risky for me to possibly be involved in, despite having been in those classes for the first 3 years of secondary school, and I didn’t die then. I’m not quite sure why they came to this decision either, as I usually had an adult helper with me in lessons which involved me needing physical help (as I did in Food Tech and Art also, but I guess I was less of a liability with a spatula than a soldering iron) so it puzzles me as to why my school wouldn’t allow my helper to ensure that I’d be safe in these lessons in order for me to do a Graphics GCSE for the final 2 years of school for example.

Oh but that’s still not the whole story. Way back when I first started secondary school at the tender age of almost 12, I remember being quite excited that my mum had bought me the school PE (Phys Ed) kit, which consisted of a navy blue pleated skirt, I think, and a white collored t-shirt. Not very exiting you might think but it was an improvement on the itchy black leotard and plimsol days of Primary School. Ahead of what I guess must’ve been my class’ first PE lesson, I was told that instead of doing the same activities like running, long-jump, netball and even contemporary dance etc with the rest of my female peers, I’d be doing separate things with my helper. We’d spend a while in the basketball courts trying to beat my own records of bouncing a basketball, and at other times in my first few years at school I’d go to a local hotel’s swimming pool with my helper. Swimming was and still remains a good exercise for me as I can move about a lot more freely in the water, and the perks of my Dad being a Naval Officer meant as kids me and my brother had regular swimming lessons which I loved. However, this still meant I was separated from my peers and my two good friends whilst they were together playing team games and practicing for Sports’ Day, which I was never involved in for the 5 years of secondary school.

There were other times that I didn’t get to do what everyone else had the option of doing – like going on trips abroad with the school – there was a residential trip in year 6 that I couldn’t go on, and I guess we just went along with the advice from the headteacher that it’d be too difficult. I did get to go to France at the end of Year 7 though, which I loved but that was the only trip I went on. I’m pretty sure there was a skiing trip at some point, and whilst I cannot ski, well in the traditional way anyway, I’m sure I’d have liked to have tried para-skiing, or just been strapped to an inflatable doughnut an released down a mountain, whichever. But of course it wasn’t even considered that these kind of monumentous trips abroad could include a disabled student, regardless of whether or not I could ski. It would’ve been nice to go and watch and be with the other kids. Or maybe the trips abroad could’ve included more cultural adventures rather than extreme sports in order to make more events more inclusive of students with differing abilities.

The problem for mainstream schools though, is that disabled students are always the minority. So any resources and funds put in place in order to make subjects and extra-curricular activities available to all students, probably get forgotten about. Imagine if schools had a clunky old racing wheelchair, or a stool for people to sit to throw a javelin, or students’ classmates all got excited at the idea of racing their paralysed classmate down a snowy hill in toboggans. Everyone has to put up with past-it sports equipment, almost chopping their fingers off whilst using an electric wood cutter, and getting homesick whilst away with school, it shouldn’t be any different for disabled kids in mainsream education.

I’d like to think that things are different now than back in 1998 when the internet was too young for new ideas to spread and attitudes didn’t change as fast as they can do now. If you’re the parent of a disabled child, please don’t settle for being told your kid can’t be the next David Attenborough just because the curriculum might contain things they’ll find physically difficult or even impossible. Insist that they change what can be changed.

I completely regret not having been able to study Geography, I loved it for the first three years of secondary school and I know I would’ve continued to enjoy it. I’m fascinated by our world and how it formed and is still changing, and that 12-year-old girl who was really proud of the cardboard model showing gradients of hills, really wishes she could’ve had some of the same adventures as the rest of the year-group when it came to exam years.

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

If you’re a teacher or a headteacher, or a head-of-department and you think there might be parts of the curriculum which aren’t within every student’s grasp, you can change it. And if you’re another disabled kid just like me, don’t be afraid to ask ‘why not?’. I didn’t, and I wish I had.

 

The School Mum

My daughter, Amélie is soon going to start school. Along with thousands of other kids across the country, we’ll be getting up extra early on Monday September 7th to get her school uniform on, pack small pots with snacks and sandwiches and make a head of 4-year-old hair look suitably coiffed. Amélie will be a little nervous no doubt, but will mostly be excited, more so because she gets to use her Frozen lunch box and rucksack. I on the other hand, will be more apprehensive. 

The daunting thing is that we are both starting school that day, and aside from my sometimes unfounded anxieties about my children, I am selfishly more nervous about my new role as a School Mum. I don’t think I know which category I fit in, I’m presuming there isn’t a group next to ‘yummy mummy’ or ‘forgetful parent’ that says ‘the disabled mum’. Are there any books I can read to prepare myself for how to behave? How many people do I need to converse with at the school gates?  What do I wear? How many times is it acceptable to use the question “did you have a good summer?” Is it frowned upon to only talk to people you already know? Surely complete strangers don’t need to introduce themselves just because their respective children spend all day together? I’m imagining it might be a bit like going to the hairdressers’. Neither party in the hair cutting experience actually wants to get into the other’s personal life in the 50 minutes you are sat in the white faux leather chair, with a floor-to-ceiling mirror reflecting your own awkwardness. The hairdresser doesn’t particularly want to know if you’ve any holidays booked this year, and she couldn’t give two hoots about your perspective on the weather. If she wants to know, she can look out of the window.

I’m wondering if every school mum strives to be on the PTA. I’m not sure if there’s an audition process, or if I’d have to bake a homemade coffee and walnut cake as bribery, or if I have to be related to the janitor or something. I’m assuming it’s still somewhat of a club for moany overgrown Teacher’s Pets like when I was in primary school. I love a good moan and I’m all for supporting people to make changes that need changing, especially when it comes to something my children have to be involved in, but I’m not sure if I want to be a part of yet another battle of popularity, ego boosting and parent politics.  It’s going to be complicated enough trying to find ways to explain to new people that they don’t need to swoop in and do my kid’s coat up for me. I don’t doubt there will be a Rescue Parent rotating around and with their nose in everyone’s business at all times. Those are the kind of parent politics I’ll be dealing with!

So what sort of school mum are you? Do you always try to make conversation with the person standing next to you or is it acceptable to have moments of relative silence, not needing to know what brand of cornflakes the other buys, or how their kid scored on the spelling test? Is it important to make sure your little darlings look their best for at least the beginning of the school day, out of the fear of what other parents might think? Nobody doesn’t judge. We all do it. I like my kids to look tidy for the most part and I like their hair and clothes to look like they’ve been washed recently. No one wants to sit next to the smelly kid. But almost equally, they are kids after all and does it really matter if their shoes have yesterday’s mud on, or they have a toothpaste smear on their sleeve.* 

I do also wonder what teachers’ impressions of certain parents are. I often get anxious about the fact that I don’t often speak up about something I want to say to those looking after and educating my children. In a similar way, I get anxious and paranoid if I ask those people something which I only need to ask because of my disability out of fear of being an awkward burden. For example, at the Parent/Teacher meeting a few weeks back, I seemed to get more stressed than necessary, about needing to ask Amélie’s future teacher what the wheelchair access is like throughout the school. I don’t plan on hanging out in the playground at lunchtime, or joining in with the infants’ Christmas Production, but I need to know what kind of lengthy detours I’ll have to take to get around in the buildings my child will be in for the next 7 years, and my youngest child for three years after that. I don’t want to single my children out as those kids whose mum can’t get into their classroom for parents’ evening. 

It’s given me a lot to think about. I wonder what Amélie’s new friends will be asking their parents about the lady in the wheelchair, and what their parents will say back. You might be thinking that this is all very presumptuous to think that I will be occupying people’s thoughts this much, and that I’ll blend in with the rest of the parents waiting to pick up their little darlings and their precious offspring won’t stop to stare (which I don’t mind, by the way) and maybe you’ll be right. But experience tells me otherwise.

It hasn’t ever happened. I’ve never blended in; as much as I’ve tried, I’ve always been ‘different’. Well since I started primary school myself around 25 years ago. Attitudes have changed since then but there is still a heck of a long way to go. Just having to ask about school wheelchair access singles me out instantly. Then I have to consider the gradient of the slope into the school entrance, too steep and I’ll have to bulldoze parents (maybe some kids too) on my way in, or I’ll need help just to access the school to pick my child up.

I just don’t want Amélie to feel different in her first few years in education because her friends have noticed something different about her family. The next few days and weeks will be very telling. 

Until then, I’ll be the one lingering at the outskirts of the queue like the awkwardly misshapen carrot in the field that isn’t quite sure of its future occupation. 

*seriously, how long until a child stops wiping their toothpasted face on their clean sleeve? I’ll let you know in a few years…

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