15 things only disabled people will understand (get annoyed by).

1. You use a wheelchair. It is not something you’re bound to and is actually just a slightly more convenient way of moving around.

2. Knowing the exact terrain of a certain journey by foot/wheel and precisely where every bump/ramp/jagged bit of concrete is.

3. Also the frustration of trying to find a kerb drop when trying to move on or off a part of the ground/grass.

4. Whilst you might love the idea of a hot sunny day, the thought of your skin on your lower back and legs sticking to your chair fills you with dread.

5. Being known as ‘the person in a wheelchair’ before any of your actual characteristics, but also knowing it’s a quick way to distinguish yourself from others; for instance when booking a hair cut, “I’m the mum in a wheelchair that you saw back in April”.

6. Not being able to watch or partake in simple events/groups purely because there are stairs.

7. Getting annoyed at your own clothes for not sitting right on your wonky body.

8. Denying yourself another cup of tea because the faff of going to the toilet again is too much of an inconvenience and you have other things to be doing.

9. People’s assumptions. Of everything.

10. Other people leaning on the handles of your wheelchair and the mini heart attack you have when you think you might tip back and die.

11. Not being able to visit certain friends’ houses because of the access or lack of downstairs toilet. Tea is always at your house.

12. Being mistaken for the 4th child when turning up at a restaurant with your partner and 3 kids.

13. Hearing waitresses ask your partner if you’d like to stay in your own wheelchair or sit on one of their’s. I can indeed answer that question myself.

14. Having a logical preference for certain types of table legs. And mugs. I’m not even going to bother explaining that and just leave it sounding weird.

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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

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You can’t feed your baby here

I visited Marks and Spencers in Torquay recently with my young baby and my friend. We went into the baby changing/feeding room to change his nappy and I was surprised to see a place where mums can breastfeed in private, in a nice comfy chair, if they so desire. Even if you’re confident to feed wherever, it’s nice to have the choice to feed somewhere calm and comfortable. 

There was also a separate toilet cubicle for non-babies/adults/grown-ups to wee in private. However, neither of these rooms were accessible to me. By that I don’t just mean that there were no grab rails (there weren’t) but I literally couldn’t get through the ridiculously narrow doorways. My wheelchair is a pretty standard width and I can normally fit through ordinary doorways. But these were in no way ordinary. In fact I’m sure normal mums (I’m not quite normal) would struggle through them with a baby carseat or pushchair. I’m sure there is a perfectly understandable reason why M&S couldn’t spend out on wheelchair accessible change & feed rooms, it’s probably because they spent too much on vocal coaching for the tantalisingly sexy voice-over of their TV adverts. 

Aside from the toilet and the breastfeeding room not being available for me to use, the changing tables are also too high for me to reach. This is something that occurs in pretty much every baby changing cubicle however. They’re normally situated in disabled toilets which is just lovely. I get to smell my own kids’ poop on a daily basis, I don’t need to sample the aroma of 30 other babies’ sh*t when I go to the toilet but that’s a minor issue compared to how much room the changing tables and giant nappy bins take up when you’re trying to turn an electric wheelchair around in a tiny space. 

So I was left with a conundrum. I could wee in the separate disabled toilet across the corridor and just about fit the baby carseat in there too, but where could I breastfeed my baby? I didn’t like the idea of feeding him in the only toilet that I could fit my wheelchair into, and why should I have to? Would you eat in the toilets? Did it not occur to anyone that some mums might use a wheelchair? No, probably not. 

Instead, I whipped a boob out in the middle of the school uniform area and self-consciously fed my son. Hopefully I didn’t scare any young children, vulnerable pensioners or anyone in between.

To briefly conclude – These aren’t JUST breastfeeding rooms… These are 100% British M&S inaccessible breastfeeding rooms. 

The feeding room…


The parents’ toilet…


The hungry baby…


@shopgirlygm

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…

@shopgirlygm