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 traveler 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…

The Royal Parks Half Marathon

I did it! I can’t quite believe it, but I really did it!

My time wasn’t on target, but when the time came I decided to take part against medical advice, so I was just pleased to cross the finishing line at all.

The Royal Parks Foundation Half Marathon is a really fun run in many ways; it passes through some of my favourite parts of London and the atmosphere is incredible. Supporters from all the charities stand and cheer everyone passing, and if they see a name on a shirt they give that person a particular cheer. Volunteers from the major charities represented (including Mind and Help a Capital Child) staff the water / Lucozade stations, and this year at around the 9th and 10th miles there were even some wise people offering sugar in the form of jelly sweets.

It really was the perfect first half marathon in many ways; more-or-less flat, good road surfaces, genuinely enthusiastic marshals and supporters, and a really gorgeous time of year. The day was warm enough that it felt hot to run in, but the leaf-fall and cool wind were refreshing.

I was exhausted by the end, but the support from everyone who has sponsored me, and the YouthNet volunteers, staff and service users who cheered me on before and during the race. YouthNet do sterling work, and have done for sixteen years. If running until my whole body aches is what it takes to keep them going, then so be it.

Maybe, just maybe, I’ll do it again one day.

Pall Mall, nearly 6 miles in

Why I’m running 13.1 miles for YouthNet

On the 9th October, I’m running the Royal Parks Foundation Half Marathon for young people’s charity YouthNet. It’s been a really difficult period of training – recently interrupted for weeks at a time by ill health – and I’m working really hard to do this. 

In the grand scheme of things, I suppose not many people have heard of YouthNet, the charity that runs TheSite and Do-It, but they have an enormous, unseen impact. I started as a service user on TheSite ten years ago, so I feel like they’ve seen me through my awkward adolescence and out the other side.

I’m not going to claim to have had a terribly difficult life; I had a rough time with mental health difficulties as a teenager, which manifested in a number of different ways, but generally my family were supportive. I still needed somewhere more private and anonymous to talk and be listened to. A non-judgemental outlet is one of the most helpful things you can give to young people in these circumstances, and that is a huge part of the ethos of TheSite. The fact sheets present information without judgement, and the message board and live chat user communities provide a peer-support system that allows people to be anonymous and therefore more open than they would be among friends and family.

Back in 1996, when the charity was first forming, it was very difficult to find funding. The idea of a charity offering services entirely online seemed somewhat limited in the days of dial-up, and there were concerns about the sort of information children and young people might be able to access (predictably, early on the non-judgemental nature of the information TheSite.org provides has in the past riled the Daily Mail). Now, we can hardly imagine the world without the internet, and it seems obvious to me that young people who find it difficult to access support services turn to the internet for help. Indeed, TheSite.org appears in the top results on Google for issues such as unplanned pregnancy and self-harm. Online support isn’t the be-all and end-all for big issues but it can be very helpful in sign-posting people to local services, and persuading them to seek help.

I’m hoping to start training as a chat moderator in the next few weeks, to help facilitate the live chats. These days, a lot of people come to the community through the live chats and it’s inspiring to see how uplifting the community can be for people who are in real distress.

YouthNet makes a crucial difference, but as an online charity they go largely unnoticed by the wider community. As they celebrate their 16th birthday next month, they deserve wider recognition and I’m running all 13.1 miles of the Royal Parks Half Marathon for all the young people who need their support.

Please sponsor me £2 if you can!

Run, run, run….

So, here’s a silly thing I did.

I have signed up to run* the Royal Parks Half Marathon in October for the fabulous YouthNet. They’ve been online since 1997 offering impartial advice and support to young people in Britain (primarily) and worldwide. I’ve made some good friends through volunteering for the Respect? campaign run with the British Youth Council and within the community of service users.

I wanted to run in the Penn 7 last year for the Ian Rennie Hospice at Home, and I would still like to raise funds for them in the future, but I wasn’t well for a time and wasn’t able to train for it.

There will be a team of us going – not all running for the same charity – and although I don’t expect us to keep up the same pace all the way it will be nice to have people at the starting line.

I went for my first run this morning and whilst it was not great, I haven’t run properly for about 2 years so I’m not despairing just yet. I plan to run at least 3 times a week during Lent – more if I can, as it’s also the Easter vac – and keep working slowly up to my goal. It won’t be easy, but I know running does my brain and body good and I do love a challenge!

Here is my fundraising page on JustGiving, I have pledged to raise £500 for YouthNet. If 200 people sponsor me £2.50, I’ll get there.

*Or at least complete!