Tag Archives: wheelchair

The 10 Year Challenge – dealing with change.

23 Wednesday Jan 2019

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For the last couple of weeks the 10 Year Challenge has been sweeping social media, and so far I’ve abstained. It’s not that I don’t like my face now, or my body; I’m happy with those changes. In 10 years I’ve gained a fair amount of weight but love my curves and softness. My hair is still usually short, although a bit thinner and with a lot of white hairs dispersed throughout. I’ve learnt how to use brow pencil. I’ve still not learnt how to pose without looking silly. My personal style is more defined (and still not grown up). But I’ve not been able to post any flashback pictures yet because this challenge holds more poignancy for me than I can summarise in a side-by-side comparison.

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This is me in Utrecht in August 2009, on my last day of a month Interrailing on the continent. Four countries, countless cities, stations, hostels, new friends, and one 13kg backpack. Of course, Ehlers-Danlos Syndrome is present from birth, but it would be another few years before my symptoms worsened and became unbearable, and I sought diagnosis. At this point I just knew I was “tireder” than other people, and that my hips and shoulders could come out of place if I wasn’t careful. Pain kept me awake a few nights on this trip, and I had one day near the end when I fainted and had to stay in bed. But I managed four weeks of varying beds in hostels and stranger’s floors when couch-surfing. I walked miles every day. I carried that monster of a backpack. I got a concussion and cured it with gin. It is an experience that I have absolutely no regrets over, but that doesn’t make it any less bittersweet to look back on.

When this picture was taken I was about to start my second year of university. I didn’t know what I wanted to do with my degree yet. Teaching ESOL was high on my list, and I bought books about countries like Cambodia, Laos, Bhutan, in the idea of maybe going there after I finished university to teach for a bit. It didn’t happen. After graduation I moved back to London and stayed, and as my health got worse and worse my world became smaller and smaller. Part of this is due to the access issues facing all wheelchair users. When I went on that trip in 2009, I booked my flights, my Interrail ticket,  the first hostel and the last one – as well as one night in the bizarre Propellor Island hotel in Berlin. Everything else I played by ear, because I could be spontaneous, and it’s that spontaneity I miss so badly now. Even if I wasn’t too ill to attempt a month of travelling, access issues would come up constantly if I tried to repeat it. Getting to the city from the airport by the hostel’s free shuttle wouldn’t be possible. None of the hostels I stayed in were wheelchair accessible, nor the apartments of people from Couchsurfing or friends I’d made on the trip. The trains and stations weren’t all accessible (none at all in Poland) – and forget just hopping on a train without knowing the precise access details of the destination station and whether the local buses are accessible either. As for the giant backpack (his name is Hamish), I don’t know how that would work now! I’ve travelled quite a bit since becoming a wheelchair user – making up for the previous few years of being mostly stuck where I was – and research is everything. Lots and lots of research.  Spontaneity only happens within the confines of the “places I’ve been already and know to be reliably wheelchair accessible” list, and then only when I’m feeling well enough.

The person in the photograph thought they had everything ahead of them, could do literally anything with their life, and I still often find it hard to accept that so much has changed since then. This weekend I was having a small mope about this subject (which has become this blog post). “It’s so different to how I imagined my life at this point” I cried to my boyfriend. After pondering on this for a moment he replied with some words I need to remember when I feel sad about this: “Just because it’s different, it doesn’t mean it can’t be wonderful.”

 

Disabled facilities are not storage spaces.

14 Saturday Apr 2018

Posted by in access, Activism, Disability

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“Disabled facilities are not storage spaces.”

You’d think the above statement would be obvious. After all, what use is a cubicle or toilet if it can’t be used for its intended purpose? Unfortunately, the answer is often found inside – where these facilities created to enable wheelchair users to try on clothes or use public conveniences are misappropriated as store cupboards.

I cannot tell you the entire range of items that can be found in accessible loos, but to give a brief picture from my own experience: mop buckets and cleaning equipment, excesses of nappy bins, unfolded baby changers, staff members’ bicycles, zimmer frames and wheelchairs belonging to other patrons, and even folded wheelchairs belonging to the venue itself. For a wheelchair user, having the space to enter and safely transfer to the toilet, let alone turn around to exit again without contorting oneself, is paramount. Having the facility stuffed with unnecessary objects and obstacles often prevents wheelchair users from being able to transfer and turn around safely, as well as from accessing the emergency pull cord (which has its own ongoing issues with being cut or tied up). In the worst case scenario, a wheelchair user may find themselves without a toilet they can use while out of the house. We shouldn’t have to pre-check that the toilets are not being used to store things before we choose where to go for supper, on top of checking all the other accessible points that are needed but sadly lacking in so many public places.

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THREE nappy bins (count ’em!) in a shop’s accessible loo, preventing the ability to turn around.

And then there are fitting rooms. What prompted this post was a visit to Topshop the other day, my local branch in the Palace Exchange, Enfield Town. The shopping centre itself is pretty good for access – it’s all on one level, all shops are level access, most shops have lifts if they have more than one floor, and there is an accessible loo that can be accessed by Radar key. I don’t normally try on clothes – it’s less exhausting for me to buy something then try it on at home and return it the next week if it doesn’t fit – but I was having a good day and wasn’t sure which size of the shirt I liked would fit me. I was pleasantly surprised that they’d thought to include a wheelchair accessible fitting room, but less pleasantly surprised by what it was being used for:

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Even the models in their adverts would struggle to squeeze into here.

The staff member monitoring the fitting rooms was very apologetic, and helped me cram my chair into a normal cubicle and pull the curtain around its sticking-out arse (yes my chair has booty). Although I managed to try on the clothes I wanted to in a very small space, I was left feeling that “sorry we’re using the accessible cubicle to store sale rails” wasn’t really good enough. What if someone came in who really needed that larger space? Someone using a larger wheelchair, or who needed someone else to assist them in trying on clothes? Not to mention access to the emergency pull cord….again.

I’ve tweeted to Topshop and haven’t had a reply yet. I’ll keep trying. This brings me onto how to address the misuses and abuses of facilities meant for disabled customers:

COMPLAIN. Complain as loudly and as publicly as you are comfortable with, in person or online. Tell your friends, get the message shared. It is shameful to misuse an accessible space like this, and the abuses of them will only stop when it becomes seen as an unacceptable thing to do. This won’t happen without public pressure from customers both disabled and non-disabled. So, next time you’re in a clothes shop with an accessible fitting room, have a look and see what it’s being used for.

In the meantime, I await a response, any response, from Topshop….

ACCESS REVIEW: Victoria Palace Theatre (Hamilton) UPDATED 30/03/2018

08 Monday Jan 2018

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Let me start by assuring you that Hamilton was as astounding as the hype suggests. There is nothing to worry about in terms of the quality of the performance. However, as the theatre has just had a refurbishment, I had higher expectations of the accessibility. I’m going to break it down into sections.

Getting Tickets
I signed up to the pre-sale list as soon as it was announced. Somewhat predictably, I was unable to buy the tickets I needed online (see: the vast majority of times I’ve bought theatre or gig tickets). I was sent to a form to fill out, with assurances that I would be phoned back – with no timespan given. That was worrying to me because I have big phone anxiety, not to mention a variable sleeping pattern, and only turn my phone ringer on when I know I’ll be getting a call. Luckily they called two weeks later when I was in Starbucks playing on my phone. I got the impression that they hadn’t even decided how many wheelchair spaces to have yet.

Entrance
No complaints here. We made ourselves known to the staff who were managing the queue, and were handed over to the Access Host – and fairly impressed that they had someone who was dedicated to that job. The wheelchair-friendly entrance was around the side, no scary ramps, good sized door.

The Wheelchair Space
Here I encountered problems. The first thing I noticed was that the floor, as is common in theatre stalls near the back, was sloped downwards. While the stalls seating stood upright, my wheelchair tipped downwards to the point where I had to use the tilt-in-space function just to be sitting upright and take pressure off my hips. I’ve been to theatres with sloping floors where a sort of wedge was used to even out the angle for the wheelchair user (after all, not all wheelchairs, manual or electric, have tilt-in-space functions).

The other problem with the wheelchair space was the view. At the Victoria Palace Theatre, the only wheelchair spaces are on either side of Row T, the back row of the stalls. This would have been less of a problem, if not for the significant overhang of the circle balcony (see picture below) which meant we were often unable to see when performers were on the higher levels of the stage. When I posted the picture below on Twitter, multiple people who had also booked a wheelchair space (either side), told me that, like me, they had not been told that the wheelchair space had a restricted view when booking. But, because this is the only wheelchair space available, it seems to be take it or leave it. I did ask the Access Host if this row had the only wheelchair spaces, and she talked to someone more senior and came back with the answer that the council did a health and safety check and told them that the wheelchair space had to be at the back due to fire safety. I took this at face value at first, then remembered that at another theatre I had come in through a corridor, and was still placed halfway down the stalls section. I plan on contacting Delfont Mackintosh, who own the theatre, with my access concerns, and will hopefully be able to verify this.

HamiltonWheelchairView

Not the best of views.

 

Services
I didn’t go to the bar before the show started, but C tells me that he saw another wheelchair user there. That, and the fact that the Access Host offered to escort us to the bar before the show, makes me believe that there is an accessible route to at least one bar. Something that I would have appreciated was being brought a merchandise catalogue, which I’ve been offered in other theatres. I don’t know if there was a merchandise stand I could have accessed* (my partner, C, saw one that was down some stairs), but in any case being in a throng of people is incredibly stressful and dangerous (for them as well as me!) in a powerchair, and I’d rather order remotely to avoid that.

* Update: I have been told by someone on Twitter who has visited with a wheelchair using friend that there is indeed an accessible route to a merchandise stand.

Toilets
Probably the worst of the “accessible” features. To the theatre staff’s credit, the Access Host came with me in order to keep people to one side while I passed though (the corridor is quite narrow), but when I got to the toilet I found the most face-palm worthy of all errors – a door that opens inwards. I reckon if the door had opened outwards, I would have just about been able to get my powerchair in without it being wedged next to the toilet itself and have had enough room to safely transfer. As it was, because the door was quite wide (which would have otherwise been a good thing), even ramming my chair as close to the toilet bowl as it would go, returning tilt to a fully upright position, and moving the seat back as far forward as possible, the door wouldn’t shut. I had no choice but to leave my powerchair unattended outside, angry with the knowledge than many wheelchair users will not have that option if they need to use the loo. Maybe those who use small self-propelled chairs would be okay, but there wasn’t a lot of space to use the pull down transfer rail that I saw. Oh, and when I got into the theatre, I could see there were two folded transport chairs belonging to the theatre on the inside, further reducing the available space. Again to credit the staff, these were removed after I commented. But overall, not great accessible toilet facilities which many wheelchair users would find troublesome.

I will be working all of these worries into an email to Delfont Mackintosh.

& again, don’t worry, the show itself was awesome 🙂

*Update 09/01 – Someone kindly sent me the theatre’s (out of date) access page which states that there are FOUR wheelchair spaces, and they’re somewhere in the middle, not right at the back. I wonder why they changed this? More for the email… 

*Update 30/03 – Hello again! I’ve had some replies from the operations manager of the theatre, who was very apologetic and impressively keen to rectify the issues I raised. In their response to my email, the manager promised to sort out the levelling of the wheelchair spaces (they now have a wedge that non-tilting wheelchairs can use, which should be offered by the access host on arrival), to instruct staff never to store the theatre’s own wheelchairs in the accessible toilet, and to replace the inwards-opening toilet door with a bi-fold one. All of these things seem to have been done immediately after my email (although I have had reports of wheelchairs stored in the loo again, which I have fed back), and in addition I have been told there are wheelchair spaces available in the stall-level boxes (which have a level floor), bringing the total number of spaces per performance to seven. Thanks to everyone who’s been to the show since who’s shared their experiences with me about the improved access. If you’re going to Hamilton in London soon, and are a wheelchair user or will be using the accessible toilet, please let me know how the access was as I am eager to know how much difference the improvements have made the experience for disabled fans!

My wheelchair is not a prison!

12 Sunday Mar 2017

Posted by in Blog, Disability

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Since becoming visibly disabled in 2013, after several years in the invisible camp, I have been anxious about seeing people I used to know, and meeting new people. Not just the inevitable “what happened?” (answer: “technically nothing, I was born with this”), but the misguided sympathy I now get for being a wheelchair user. Non-disabled people tend to see the wheelchair as The Worst Thing That Could Ever Happen to someone – look at the terminology used: wheelchair-bound; stuck in a chair; confined to a wheelchair…. but they don’t think of the alternative. Before I had my electric wheelchair, I would leave the house once or twice a week, as it caused me that much pain to walk and the knock on effects weren’t worth it. Now, as long as I’m not in a bad fatigue phase, and can get what passes for “dressed” enough, I can go out multiple days in a row with only minor consequences.  Without their wheelchairs, tens of thousands of people in this country would have no access to education, work, or a life outside of their homes.
The futon is my prison, and the wheelchair is my freedom and my best friend.
I will admit to getting a bit (extra) depressed from time to time because I miss being able to do the things I used to love – dancing, climbing, scrambling, hiking (basically anything involving going up mountains), kayaking – but what people often fail to understand is that even if I didn’t need my wheelchair, or the crutches I sometimes use, I wouldn’t be able to do these things anymore anyway. The wheelchair is not the symptom of my condition or my limitations, it is the thing that helps me continue to do what I have left. So don’t aim your sympathy at my wheelchair -maybe channel it into anger at the lack of wheelchair access I and other disabled people face instead!

The Nearly Universal Cupholder

05 Monday Sep 2016

Posted by in Disability, Reviews

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Yes it’s a product review. I’m sorry. But it’s also my first one so please show leniency.

I wanted a cup-holder for my wheelchair. Sure, without both hands taken up with crutches I can hold a coffee, or put a bottle of water on my lap, but it always leads to confusion, stuff-balancing, cold legs, hot hands, or a mix of various pains and faff. I was given a cup holder meant for buggies a while ago, which needs a cylindrical frame of a certain diameter to fit.  However, my powerchair doesn’t seem to have this at all, except in places I can’t reach. Unhelpful. Most wheelchair cup-holders I could find seemed to be clamp-based which wouldn’t work on my chair either, due to the hardware under the arms.
I’d been keeping an eye on the Nearly Universal Cup Holder for a while on Amazon UK, torn between the reviews (overwhelmingly positive) and the price (£17.95 – a little prohibitive for what is essentially a piece of plastic and some Velcro) but in the end after yet another frozen-frappuccino-hand I decided to give it a go.

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Setup was pretty easy – I was concerned about the amount of hardware underneath the arm as Quickie powerchairs are wont to have, but the Velcro straps were no problem. Without using the extra foam pads provided, there was only about a 1cm give each way when gently jiggled. It’s easy to remove, if you have to squeeze into a tight gap (and I would recommend removing it if you’re not totally sure, in case of breakage).

I recommend this product if you have a wheelchair or powerchair with standard width arms (mine are just over 2″ across) – and if you’re not sure if it will fit your chair, the OH-4 website has a contact form so you can check before you buy (you don’t have to buy from the USA website – it’s on Amazon UK).

Happy drinking!

Update, Dec 2018 – I’ve now been using this product for over two years and it’s held up remarkably well. It’s more robust than I’d imagined – I often use the cupholder to hang my shopping bag off too and it hasn’t warped or bent at all! This durability makes it incredibly good value for money in my eyes. 

 

The buggy/bus saga rolls on….

30 Tuesday Aug 2016

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(Again, apologies for the formatting. I wrote this on my iPad and copied it over.)

The wheelchair vs buggy on the bus debate is continuing to roll on, with the Supreme Court ruling yet to be announced, more than two years after Doug Paulley opened his landmark case against a transport group for failing to ensure wheelchair users could use the spaces legally provided for them.

I’ve seen a lot of posts from parents this year on various platforms not only arguing
their rights, but equating them with those of the disabled people they are
keeping from accessing public transport, so I thought I would make an
annoying list of bullet points to round up my errant brain kittens on
this. Warning: will contain personal experience and also instances of
ableism.

(All points assume that neither the parent nor child is themselves
disabled. If a disabled child in a wheelchair buggy is in the
wheelchair space, well, it’s a wheelchair space, and that is a
wheelchair.)

So important it doesn’t get a number: the bleat “You wanted equality
now you have equality” holds no water here. This is not equality, not
when a non-disabled person can sit anywhere in the bus (or indeed
stand if there are no seats) but a wheelchair user only has one
option. Not equality, but it is a small step towards equity.

1.      The wheelchair space on the bus is the only place which a
wheelchair user – be it manual, transport or powered – can safely
travel. Most wheelchairs are too bulky to be able to go anywhere else
without blocking the aisle, even if they don’t move while the bus is
in motion.
2.      For most bus companies, the current rule for parents with buggies
is that they may use the wheelchair space if it is not needed by a
wheelchair user. This is clearly marked on signs in the wheelchair
bay.
3.      According to the Big Red Book (the driver’s manual for TFL buses), upon trying
to board a wheelchair user when there is already a buggy in the space,
drivers are first supposed to play the automatic announcement and, if
this doesn’t work, then go and ask the parent to please fold the buggy
so that the wheelchair user can board.
4.      The rules are apparently made to be broken: more often than not a
driver will shrug apologetically and say they have a buggy on board.
This kind of driver is unlikely to actively engage with the parent, so
I have to ask them to open the middle doors so I can speak to the
parent myself and plead with them to let me on. It’s not dignified,
but sometimes I can’t afford to wait for the next bus – hell,
sometimes this IS the next bus!
5.      Obviously this doesn’t work all the time – it’s pretty much 50% in
my personal experience, and half the time I do board (size of
wheelchair space dependent), I have to slot in next to an unfolded
buggy, in an “illegal” position. It’s okay in my powerchair, if not painful due to people continually bumping into me,  but
manual chairs are far more prone to tipping and this could be very
dangerous especially as UK buses don’t seem to have
restraints/wheelchair belts.
6.      If a buggy won’t fold at all, the driver is supposed to offer a
transfer ticket for the parent to board the next bus at no cost. I
have yet to hear a driver offer this to anyone.
7.      Should a parent flat out refuse to vacate the space, fold the
buggy, or reposition themselves so that we can unsafely share the
space (massively compounded when two or more buggies are present), a
wheelchair user will be unable to board. However, there have been
numerous times where I have used a previously unoccupied wheelchair
space and the driver has allowed a buggy on board to block me in, or
block the aisle. Yes the buggy is (often) smaller than a wheelchair,
but it smacks of double standards.
8.      The most controversial point… A baby is not a disability. Sorry.
Sure it’s inconvenient lugging a buggy around, but the right to co-opt
spaces that disabled people fought for doesn’t come with that
temporary impediment. It’s almost as if everyone has forgotten that
before disabled people literally chained their wheelchairs to buses in
protest for access, all buggies had to be folded before boarding
anyway. Years of access to a space created for disabled people has led
to entitlement and apathy. Why not join growing protests for TWO
accessible spaces on the bus, or start your own movement with other
parents? The benefits of disabled victories are not yours to reap with
impunity.
9.      A little bit of empathy goes a long way. I’ve let buses leave
without me, with buggies on board, knowing that there is another bus
not far behind. Similarly, I’ve had a mum with a baby get off a stop
early so I could board. I know there’s a striking juxtaposition
between this point and the last point. Consider point 8 aimed at those
who insist that their rights to have a giant unfoldable buggy trump
everyone else’s, and point 9 an ideal case of working stuff out in a
non ideal situation.