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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Accessible travelling and staying at Travelodge

*Disclaimer – I’m aware that many Travelodge hotels are being refurbished and updated to improve their style and facilities. However I have stayed at the Oswestry Travelodge hotel several times over the last few years and it doesn’t appear to have had any sort of makeover, yet.

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I’m not expecting rose gold taps and feather pillows, I’m just expecting a clean, accessible room which I can move around easily in, with my partner and my children.

Booking a Travelodge stay online (and this applies to Premier Inn hotels too) you select the destination, the dates, the number of guests and the room you require. Quite simple it should be!

Not when you’re a wheelchair user who is also a parent! If you select an accessible room, AND you have a child/children with you, no such room exists for your needs. You can either book an accessible room OR a family room. Apparently people with disabilities don’t have children.

So I book an accessible room, as those requirements take priority incase they give us a room up 3 flights of stairs or something. I do not add that I have children staying, which I’m sure goes against their fire regulations but that is not my fault. We bring our toddler along and his travel cot fits in the corner of the room. We were even able to select an option to add a domestic pet, as our whippet Jackson also came along. So I could bring my pet dog (not an assistance dog) but not my child! Luckily my grandparents live nearby and our daughters could stay at their house. It’s easier for us to stay at a hotel down the road as it has the access we need, privacy and an accessible bathroom.

OR DOES IT?

When I think of an accessible hotel room I assume it will have a wet room type shower and accessible sink and toilet. Not here. Many older Travelodge hotels have a bath in their ‘accessible’ bathrooms. A bath which, when you sit in it, has a massive grab rail along the wall which sticks into your side meaning you have to sit leaning to the outside edge of the bath whilst washing. Comfy!

The room is almost big enough, but with my wheelchair taking up a large proportion of the available floor space, there is little room for me to sit on the floor to get dressed.

The beds are twin beds, usually placed separately unless you request for them to be put together. Because of course disabled people don’t have partners, silly! Luckily my partner hooked the beds together, though one hook didn’t work so if you lean on the gap you might slowly disappear between the beds like I almost did a couple of times.

Did I mention there was only 1 set of towels? Tom looked great with the tiny bath mat towel wrapped round him though.

So to sum it up, no facilities will suit everyone with differing needs. But a wetroom and a room with space to move around is a start. And disabled people have partners. And children. So why do we have to pretend to be childless single people when booking a hotel room?!

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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.

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Pimp my ride (my shopping trolley).

Last week was one of the busiest I’ve had in a long while in terms of things regarding disability, and complaining which I enjoy doing.

On Tuesday I met with Marc Radforth from the German international trolley manufacturers Wanzl. He came down from the Midlands to meet with me in a local branch of British supermarket Sainsburys, who of course use their shopping trolleys. We talked about the current options when it comes to choosing and using a trolley to carry out your shopping fun, which is normally something one undertakes in a mindless fashion – person approaches trolley park, person selects trolley at the front of the queue of trolleys waiting in line hoping to be picked and taken for a spin, person turns trolley around and walks around supermarket putting items in said trolley. This is fascinating right? Please keep reading.

Sounds very simple and straightforward, and normally  the only problems arising from trolley selection and use, are things like getting a trolley with a wonky wheel, and trying to insert a 3 year old into a tiny folding flap of plastic seating when they insist on not walking, and you’re not allowed to leave them tied up outside anymore. Then they moan about the seat being cold or wet or too hard. You try saying to them “What do you want, a bloody goose-down recliner and a pina colada?” You tell them children in third-world countries don’t even have such luxuries, but even that doesn’t make them feel guilty enough to stop whining. The problems don’t stop there though. Well for most people they do, but I’m not most people. My difficulties and needs don’t follow any textbook guidelines, even ones about wonky people. Usually wonky people are taken to a supermarket, pushed around and helped in their shopping needs, but if they happen to be a parent (really!) and wish to be a parent whilst going shopping, their child would have to be transported in a trolley/pushchair pushed by someone else. There are no options for baby/child-friendly trolleys for parents who also cannot walk themselves. Currently, my option is this: put baby+carseat in the raised-up ‘BabySafe’ trolley (I mean, someone else will do this for me as I cannot reach) and then other person pushes trolley around with my baby in it whilst I travel behind/in front/next to the trolley rather than being in control of it myself. Onlookers don’t know I am this baby’s mum and inside I’m screaming,’I know he’s cute, I made him!’

Wanzl’s ‘BabySafe’ trolley with generic European baby.

Wanzl read my Tweet about the trolley issues I have and got in touch with me. They said it would be useful if someone could meet with me to discuss my needs and possible future options. The good thing about a company like Wanzl is that from the meeting I had with them, it was very clear that they will go above and beyond the effort made by most companies to try and provide for all needs. But they can’t provide for this without someone telling them exactly what is needed and what is currently not available. We talked about the new lower-level Babysafe trolley that I found at Asda  and Marc said that this style of trolley was re-designed with the help of people on Mumsnet where it was mentioned that the tray for the carseat was too high both to reach and plonk a heavy baby and carseat on, and also to see over. I have been witness to my PA who is 5’8″ crashing into a wet floor sign that she couldn’t see whilst pushing the trolley. Luckily it wasn’t a toddler. The base of the new trolley was also brought up so it isn’t so deep to reach into. These trolleys are currently in Asda stores, with Sainsburys and other stores to follow suit shortly.

The problem I’m having is that even with improvements to the existing carseat trolley, and also the provision of other trolleys for parents to slot children into (just any child wondering aimlessly will do but parents tend to provide their own) like these:

Trolley with Trend baby seat.

Or these with a typical toddler seat:

Shopping trolley with folding toddler seat.

…I still could not have my child in the trolley that I’m pushing and be able to fit shopping in too. I often use baby slings but they’re not always practical when shopping. I get very hot whilst babywearing indoors and if you need to bribe your child to stop crying by paying them in biscuit currency once they come of age at around 7 months, then they need a place to sit. You might be thinking ‘isn’t there a trolley that attaches to wheelchairs?’, and you’d be right as these do exist at most large stores, and Wanzl have also improved these recently by making the attachment arms easier to operate for people who have problems with dexterity, like I do. Here I am trying out how these work and how I can indeed put a baby carseat in one of these trolleys. But it is unsafe as there are no straps, and although I have since tried this and know that the possibility of my baby falling out of both his carseat and the trolley is very low, that’s not what the trolley was made for and if we have an Earthquake in the foreseeable and he falls out of it, I’d very much regret using an unsuitable trolley. There isn’t a folding toddler seat either. And also, with a carseat/child in the trolley, there’s no room for my coffee grinder, my sledgehammer and my horse-riding jodhpurs to go when I’m shopping at Aldi.

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Here I am having the common knee-to-trolley-handle measurement taken.

During our meeting, Marc from Wanzl told me about a young man in Northamptonshire whose disabilities and requirements were so specific to him that they designed and manufactured a trolley just for him to use at his local supermarket (not sure what happens when a different supermarket has an offer on beer or something but that’s besides the point). So some companies are willing to help even if it doesn’t bring them mass orders and profit in return.

We came up with quite a few notes on what I would need from a trolley. A good sense of humour, likes long walks on the beach, that sort of thing. But mainly just a trolley that I can affix to my wheelchair and have my child sat facing me. Wanzl use ‘eye-contact with parent’ as one of the advantages to their parent and child trolleys, so it’s appreciated that the child needs to be facing whoever is pushing them rather than being strapped to the front of the trolley facing forward, like an unwanted teddy bear on the front of a dustbin lorry.

After the meeting, I went over to the local Morrisons store (and survived) to look at their kids’ clothes, and on the way into the shop I came across these beauties monstrosities.  They looked like some kind of torture chamber from the days when disabled people were brought up in orphanages because they didn’t meet the perfect-baby expectations when they were born. I couldn’t see any Wanzl branding on them, so they’re off the hook for now:

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Really helpfully placed over the metal bumper rail too.

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‘Pick me, pick me!’ it screamed. ‘No, you’re hideously awful’, I replied.

I’m looking forward to hearing from Wanzl following our meeting, and seeing what ideas they come up with. It probably won’t be the easiest trolley to design, but in my head it looks something like a trolley+baby sidecar hybrid. I know they are willing to help though, and that is very encouraging. Hopefully it will be something that can be mass produced and used in supermarkets all over. There aren’t many wheelchair-using parents shopping at a supermarket at any one time (if we all go together people freak out a bit), so each supermarket might only need one or two of these trolleys available, which isn’t too much to ask of Tesco et al, is it?

Moving on from trolleys (I won’t be saying the word trolley too much more I promise), the day after meeting with Wanzl, I met with Andrew Sherwood from Marks and Spencer (M&S) after my ranting blog, this one, where I discovered that the breastfeeding room at the Torquay store where one can comfortably sit and feed their baby, was not accessible to me. Or anyone wider than this gap >______< it seems. So I whipped one out in the kids’ clothing aisle and fed Rafe there. When I met with Andrew, we went and looked at this room and even he couldn’t understand why it was so narrow, but he guessed it might be because the architects were trying to fit multiple facilities in this room for all sorts of parenting needs. Just no wheeled people. But I have since discovered, in Sainsburys near where I live, a similar ‘change and feed’ room with a breastfeeding area that again, I was too much of a wide load for:

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It wasn’t the most pleasant of nursing rooms anyway

So it’s not just an issue specific to M&S buildings. To the person who was holding the tape-measure on these ‘refurbishments’ – YOU HAD ONE JOB.

Some good news from Andrew Sherwood, whose role is Property Development and Facilities Management (improving access and facilities in M&S stores) he has said that they are always trying to improve things for disabled people whilst shopping. They have, where possible, tried to keep baby changing and accessible toilets separate, rather than people who need to use an accessible toilet having to endure the smell of 30 festering toddler poos, and numerous door-knockings when a parent desperately needs to change their kid’s nappy and you just want to have a wee in peace. They have also made it so that, if they have the space for it, they will have two separate accessible toilets with one being a left-hand transfer and one being a right-hand transfer. This may sound trivial to the average toilet-goer, but when most of your limbs don’t work properly, and you find transferring from chair to toilet on the right easier than on the left, it is such a luxury to be able to choose which toilet is easier, rather than struggling in the one toilet provided by  most places.

Andrew told me of the legislation and guidelines used when designing and providing facilities in buildings which should be adhered to by ALL architects so that people can expect the same level of ease wherever they go. As you can imagine, this is definitely not the case. I explained in our meeting that a common problem I have is that to be able to make use of grabrails and bars in accessible toilets, they need to be at a certain height for me to lift myself up on. And there are many places where I know I find it difficult to use the toilet either because the room is too small to turn my chair around in, especially if I’m with the kids, or the toilet is lower than it should be, or the grabrails are too high or they’re too far away. Just yesterday I was at a local hospital and went to use the toilet before my appointment and I couldn’t reach to lift myself up as the grabrail on the right of me was so far away:

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It might look like nothing, but this makes it really bloody difficult.

I fully understand that this issue probably wouldn’t be an issue for the majority of wheelchair users, as many people have normal use of their hands and upper body. But I don’t. If everywhere was the same so it was equally as easy or difficult wherever you go, there wouldn’t be that unknown when you go to open the toilet door and get that feeling of “oh great, I really need a wee but I’m not sure if I’ll be able to use this toilet, I might have to wait ’til I’m home”.

I think the problem is that most companies think that as long as they have a toilet with a bit of space around it, shove a changing table in there and twenty thousand nappy bins and a grabrail randomly attached somewhere on the wall, and an emergency alarm cord tied up so it can’t be pulled by an inquisitive child, but is actually out of reach to those who might need it and is now rendered useless, then they have done their job by catering for all needs and nobody should feel the need to complain.

Well it’s rubbish, facilities are mostly crap and badly maintained and hardly ever cleaned so you can see last month’s pee dried on the toilet seat because fuck it, it’s not used that often to worry about. At least there’s a toilet with a wheelchair symbol on the door eh?

Knowing you’ll be able to go to the toilet or choosing a trolley that you can fit your kid in and go about your shopping trip should be the least of my worries, I shouldn’t even need to think about it beforehand like most parents. But I do, and it means I often can’t relax or be fully comfortable in most places. Hopefully someday soon that’ll all change.

For now, Andrew Sherwood has asked for the doorway of the breastfeeding room in Torquay to be widened so that I can use it. He is going to make their architects aware of this flaw in their planning.

You didn’t expect someone to be able to write over 2000 words about trolleys and toilets now, did you? Next time I might provide a photograph of one of my favourite accessible toilets with no wee on the seat. Something to look forward to!

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Photos of trolleys are taken from Wanzl’s website. Other photos are all my own.