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.
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.
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.
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.
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…