Learning from the wheelchair weekend

I have always tried to understand how hard it can be as a disabled person to deal with getting around day-to-day. The world doesn’t make it easy; help is there but has to be specifically requested and the onus is on the traveller to calculate all the timings precisely. I’ve been aware of this for some time; I worked with disabled students at UCL and sat on the ‘Committee for People with Disabilities’*. I saw how hard it was for people, and like to think occasionally I helped to make it easier, but the fact is that the world was designed by people who don’t have to think about this stuff, and changing it will take a really long time.

As I’ve said, a lot of people in customer service work really hard to make life easier. The staff at Travelodge were excellent, and although the system didn’t seem to live up to much, once I’d managed to get support at Marylebone the staff were really helpful once they’d realised I was there!

Being dependent on taxis is really hard work; and a lot of cab drivers were really reluctant to lower the ramp or carry the wheelchair at all. The first time I tried to get into a cab on crutches, I fell over on the pavement twice and then had to crawl in – I refused to try again after that!

When you get into a black cab in London, there is a helpful diagram showing you how to position a wheelchair. It is to be wheeled up the ramp, then rotated 90 degrees so that it is facing backwards. The problem is, the wheelchair I was in (which is by no means oversized) didn’t have the space to rotate. I found that a little worrying. Obviously I’m fine, but if the guidelines exist, surely they do for a reason? Did no one stop to wonder if there would be wheelchairs that couldn’t be manipulated into that position? Why did none of the drivers of the four cabs I took in the wrong position reassure me that they believed it was safe? Why did I have to fight to get the ramp lowered? I don’t want to be difficult; I avoid confrontation when I can, but after the disastrous attempts to get into a cab independently at Marylebone I really wasn’t going to try again! When you only have one load-bearing leg and are still learning to use crutches, cab floors are too high and ceilings too low to allow it.

When you travel in a wheelchair or need assistance at a train station, you have to phone and pre-book assistance at both ends of the journey. Once you’re on the train, the staff at your station of origin should confirm with your destination that you’re on the train. The problem I found was that although two members of staff helped me onto the train, and another one assisted me at the barrier, at High Wycombe, no one phoned ahead to Marylebone. If they did, the message didn’t reach the people it needed to. I was left on the train until someone came aboard to clean and found me, but they did then help me and it was ok.

The other thing I noticed was that the attitude you face as someone in a wheelchair is unpredictable. A few people got onto the train with large bags, and obviously had hoped to be able to use the wheelchair space to store them. I was a bit embarrassed at their exasperation. Someone also tried to sit in one of the fold down seats but stopped because it would have meant folding it almost onto my lap, so tutted and moved away. I was a bit embarrassed. Of course, other people were very kind. Someone stopped on the way out of the train to ask if I would be ok to get off. I think she was partly responsible for finding a member of staff at Marylebone, actually.

The other thing I found was that people are somewhat prone to help without being asked! I once saw this happen to someone else; I was on the escalator at Angel tube (the longest on the Underground, fact fans), and a man in front of me was supporting himself in a wheelchair. It took a lot of concentration, and he was clearly very focused and knew what he was doing. I didn’t want to startle him by offering assistance and would never intervene without permission. I was shocked when a woman marched up the escalator, pushed me out of the way, and said, “Why will no one offer any help?” She just seized his wheelchair without asking permission.

I had the same experience trying to get from the Travelodge to Featherstone Street. People took hold of the wheelchair to move me up onto curbs, or out of their way. Someone even pushed me into the breakfast table mid-mouthful whilst I was still eating breakfast at the hotel! There is a very fine balance between assistance and interference. I was quite scared by people grabbing hold of the wheelchair to move me without asking. You become very conscious of just how vulnerable you really are.

The whole experience taught me a lot about how much we expect from disabled people. I don’t know that I see that changing any time soon, either. But we can all educate ourselves about what it’s really like.

Have a read of some of these blogs:
Through Myself and Back Again: Lil Watcher Girl, blogging about feminism, disablism and everything
Benefit Scrounging Scum: Bendy Girl, blogging about benefits and the reality of living on them

They both link to a number of other brilliant bloggers and activists.

*Yes, it is a stupid name. And apt; for a very long time there were no spaces reserved for disabled staff or students. 

Navigating London in a wheelchair (part 2)

After yesterday, I suppose I should have predicted how tired I would feel waking up, but I underestimated by a long way!

Muscles I’d forgotten even existed in my arms and my right (i.e. non-broken) leg were sore as soon as I woke, but I managed to wash, dress and get down to breakfast in the hotel this morning. 
The Travelodge staff were excellent at breakfast, they helped me to a table and collected my breakfast for me, then helped me to reception to check out and out onto City Road to head back for another day with TheSite.org Leaders. 
I was astonished, however, that whilst I was eating breakfast, someone moved me out of their way! I suppose I was taking up a bit of space in a wheelchair, and he wanted to get past, so he pushed me forward into the table. It took me a second to register what had happened, I spilled the drink I had in my hand. 
I thought I was running late for the morning session, and admittedly I suppose I was a bit cocky, so I tried to make my way along City Road on my own. It’s a five-minute walk, but took me about half an hour even with some help from nice people along the way. Again, one or two people took it upon themselves to move me in the wheelchair without asking, or telling me what they were going to do. I admit that I was struggling, but I was embarrassed to be struggling, and I felt even more embarrassed when I was just moved out of the way like an inanimate object. 
I wouldn’t attempt something like that again – it was a pretty stupid idea – but I’ll admit I was pretty pleased with myself when I did finally make it to the office. 
I had great fun in the morning with fellow-Leaders Katie and Tolu leading a session on developing and strengthening the Leaders’ network to achieve even more in the next twelve months than we have in the first year. We played a game at the beginning of our session where we asked people to label each other with a range of tasks they’ve completed in their time as volunteers. I had my labels collected on my cast – which had remained stubbornly undecorated over the previous ten days! 
Later on, some of the girls took it a step further, so that before I left for church I had collected three very sweet messages! 
Thanks, Rochelle, Rach and Sophie!
It always sucks to say goodbye at the end of the weekenders, but I hope we’re all pretty fired up and looking forward already to the next one!
I was lucky again to have some fab support getting to church, in the form of a lift from Debbie. She wrestled my heavy and clunky wheelchair single-handedly into the car and braved the wrath of Camden’s many over-keen traffic wardens to get me there. I honestly wouldn’t have managed it otherwise – I couldn’t have either got a cab or a bus without pretty serious difficulties.
Was lovely to be back at church after some time off – and I was really pleased that I managed to get up to celebrate communion and pray with some of the congregation against the odds. I had another lift home from one of the deacons, and am now thoroughly exhausted. 
I’ll sleep well tonight. 
Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Navigating London in a wheelchair (part 1)

Before I broke my leg, I planned to attend a weekend of workshops with YouthNet at part of a programmed called TheSite.org Leaders. I enjoy the ‘weekenders’, always get to meet new volunteers and I’ve made some great friends through YouthNet over the years so it was one thing I was really keen not to miss out on.

However, the logistics of getting me and my broken leg from Bucks to Old Street turned out to be rather on the complicated side! Luckily,

I managed to get onto the train with the help of Chiltern Railways staff, but then almost didn’t get off it at Marylebone! Of course, I discovered a major advantage of being in a wheelchair on a busy Saturday morning train is that it guarantees you a seat. The disadvantage is that people with luggage who were expecting to be able to use the wheelchair space get somewhat openly frustrated to have to stand because someone’s parked a wheelchair there…

Thanks to the lovely Matt – a fellow Leader who’d traveled into Paddington – I eventually got off the platform. There was some problem because the wheelchair accessible barrier at platform 3 was set to entrance not exit, so we had to leave through platform 1 (more complicated than it sounds!) and it took a while to find a cab.

When we did find a cab, the driver couldn’t get the ramp out so I foolishly tried to get in on crutches. Hint: you can’t! The floor of a black cab is too high, and the ceiling too low. After a couple of undignified falls, I settled for the even-less-dignified crawling-and-dragging-my-cast method. Nightmare!

But eventually, we did make it to YouthNet and it was a relief to be settled somewhere that was both all one one level and navigable! I only had a couple of minor falls during the course of the day. (And, to be fair, they were my fault…)

We headed out to the Travelodge on City Road to check in. One of the volunteers took the unenviable task of pushing me along what might be the most uneven pavement in London, but did an admirable job of getting me there intact! I hadn’t booked a disabled room (I wasn’t broken at the time of booking!) so I was in a room a fair distance from the nearest lift. The corridors are narrow and winding, and the doors very heavy, but it was possible to get around unassisted. There was more than adequate space in my room to get around it either in the wheelchair or on crutches with the chair locked in place by the bed.

Getting out for dinner at The Breakfast Club (Hoxton), was surprisingly easy once we’d found a cab prepared to lower the ramp. Getting pushed up a ramp into a taxi is a pretty nerve-wracking experience, and my wheelchair was too big to manoeuvre into the safest position (back to the driver), but not uncomfortable.

It was easy enough to get the chair to a table at the back of the cafe when we arrived – and, of course, the food was absolutely delicious! I had a veggie burger with smoked applewood cheddar, and a Cadbury’s Caramel milkshake. Yum. Highly recommended – I always love the atmosphere of the place and the menu is consistently fab, even for awkward veggies.

The next adventure was to get from Hoxton Square to Rowans in Finsbury Park – positively one of my favourite places to spend an evening. It took ages to sort out a cab because it was Saturday night and the first two we booked didn’t arrive (thanks, Radio Taxis) so we hailed one from the street when it started raining!

I’d forgotten, because it was never relevant to me before, that Rowans is a very high step up from the street. Thankfully, there were two very nice – and very strong – security guys on the door who were amazing about getting me in and out. I was mortified, but can’t fault them for trying! The bowling lanes themselves are up a few steps, so I couldn’t get the chair up to the lanes and couldn’t carry a ball on crutches. No worries – it saved me a whole heap of embarrassment, as anyone who has been bowling with me will attest.

Getting back tired was a bit tricky – both my stamina and balance get very ropey when I’ve been out a long time, so getting myself back to my room and into bed was hard work, but I made it! I can’t help feeling a bit proud of myself…

I ventured out into the real world

…and I am knackered!

I went from the car park, about 100m to Waterstones (with a rest half way, and a nice sit down inside) to buy myself the new Terry Pratchett and Stephen Baxter, The Long Earth. I also bought the new Thursday Next title by Jasper Fforde for my sister, and was about to take a sneak peak when I realised I’ve not read the 5th or 6th – almost exposed myself to a spoiler. Lucky escape!

Then I was tired so I hobbled to Zizzi and had a lovely pizza (thanks, Mum!) and some of my lunchtime painkillers for dessert. Then I wanted to get some shoes for Amy Oliver-but-soon-Webb’s wedding (actually I just wanted one shoe, but they come in pairs). So I hopped all the way to the lift, and back across the shop to the shoe department (hard to rest en route, the only seat is in the shoe department). Anyway, I bought some nice flip-flops for the wedding and made it all the way back to the car (four benches en route, I am in love with the architect who designed the Eden Centre).

We went home via Grandma’s, so I had the chance to give her the tea cosy I designed based on a song she used to sing us:

I like a nice cup of tea in the morning,
Just to start the day, you see,
Then at half past eleven,
Well, my idea of heaven
Is a nice cup of tea.
I like a nice up of tea with my dinner,
I like a nice cup of tea with my tea
And when it’s time for bed,
There’s a lot to be said
For a nice cup of tea.
I’ve just fallen over trying to cross my bedroom without crutches. So it really hurts and I need to take some pills and get some sleep!

Here is Binnie Hale singing A Nice Cup of Tea. Good night!

Nodavus!

(That’s what a knitting spell would look like if I wrote Harry Potter.)

Of course, even Molly Weasley doesn’t have a knitting spell. That would take all the fun and the little imperfections out of handmade goodies.

I’ve been crap at finishing Kirsty’s Weasley Sweater but there’s nothing like a broken leg to get the knitting juices going. So here’s the finished object!

I charted the K myself, you’re welcome to use it for your own Weasley Sweater or K-project.

chart for the letter K

A note on the intarsia: I started off knitting 3 and then wrapping the yarn each time, but because the leg of the K is long and straight that meant that the wraps started to pull on the front and were visible. So I started wrapping at any point between two and five stitches of the contrasting colour and it sat much better.

I’ve also finished another sweater for Joshua, this time in Opal sock yarn. It was lovely to work with, but took a little longer than I expected. He hasn’t quite grown out of it yet, thankfully.

Joshua
This is his “no, really, I love it” face.

Originally posted on RowleyPolyBird

Independence Day

On the orthopaedics ward this morning with my shiny new cast

I’m exhausted, but finally home.

Left the hospital around 2, after passing my crutches driving test. Now I’m on the sofa dozing. Getting upstairs to the toilet is really hard, exhausting to the point of tears. I’m sure it will get easier but right now I’m just grumpy.

Physio-terrorists, surgery and plaster

Aside from Rosie, a nurse who works on the orthopaedic ward and always has a terrible joke to hand, hospital staff don’t seem to make many jokes. One of the few universals is to refer to the (very nice) physiotherapists as ‘physio-terrorists’.

I had an operation yesterday morning. Hilariously like a medical drama, viewing everyone from parallel to the floor. The surgeon had a blue cover over his beard, which under the beginnings of an anaesthetic was the funniest thing ever. Seriously.

Apparently the arrow worked, I came round with pain in the right (i.e. left) leg, and the temporary cast restored. Had a new cast put on by the plaster room (disappointingly white, but I guess that just means people can come and visit and draw on it, right?). Then pretty quickly started working on crutches technique with the physios, originally hoping I could go home tonight.

Unfortunately, I’m still quite woozy and nauseated from the anaesthetic so I didn’t get very far. I’m not able to use my crutches properly. Instead of keeping my arms pinned to my side and leaning through them, I seem to just hop. It’s not ideal, but it works and my upper-body-strength is pretty shit. If I’d known I was going to break my leg I would have trained for it!

So, given that I’m particularly dangerous on stairs, I’ve got to try and sleep it off and have another go tomorrow. All being well I’ll be home in time for book club chat and my moderator shift tomorrow night.

Dinner time. No visitors today, but Mum brought Joshua, Luke and Tori yesterday. Was really nice to see them. Apparently they visited twice, but at 2pm I was only an hour out of surgery and don’t remember them being there!

Legally stoned, waking up from an anaesthetic.
(Me, not the baby.)

Morning on the orthopaedics ward

I didn’t sleep very well last night – there is a woman with dementia on the ward who gets very confused at night. The lights on the ward go out around 12:30 and come on again at 5:30. We get a cuppa at 6, but it’s a bit weak for my taste. This is an eternal problem for the Englishman away from home – no one else makes tea how I like it!

The nurses are delightful, and I’ve just had my first meal since yesterday morning. When I arrived on the ward, they’d already had dinner so I had some bread and butter and a cup of tea around 9pm. I’m not sure if it’s my hunger speaking, but I think the food is pretty good. Vegetarianism catered for and icecream at lunch time. It can’t be bad for me if it’s provided by the NHS, right?

Visiting starts in a couple of hours. I’m expecting Mum and Dad. They’ve cut a visit up north short. They were meant to be visiting family friends on the way back from a wedding, but have decided to come down to the southwest instead. Amy might also pop in, which would be excellent. She’s at a spa today winding down from last night’s hen frivolities. I’m looking forward to seeing the pictures!

The surgical team visited this morning, but my ankle is still too swollen to operate. It might be tomorrow, or as late as Wednesday. If they can operate tomorrow it’s not worth being transferred home. It’s no easier for most of my friends to visit Wycombe, anyway, and I like and trust the doctors here now. I’ll see what Mum and Dad think.

I’m beginning to realise what an impact this might really have. At first it was just funny, but now I’m having to have assistance with almost everything (I insist on dressing myself and using the commode alone – but the fact I have to use a commode is pretty awkward). I obviously won’t be at church today, but it doesn’t seem very likely I’ll be able to march with LGSW in WorldPride London either, and I’ve been looking forward to that all year. I’m not even sure if I can continue as a GamesMaker for London 2012, which would be a devastating loss.