The meaning of accessible

Last Summer, when London was hosting the Olympics, transport and accessibility to transport in the capital was a hot topic. A fair bit of work was done on the Underground network (especially at stations close to venues) to make it more accessible.

Because I get driven to work, I had lost track somewhat of public transport, until I started working 3 days a week and had more time to get out and about. 

Here's the thing. Whilst the network may be technically accessible it isn't necessarily practically accessible - this is just some tales from my corner of London.

Buses

Buses are great. They stop all over the place; mostly with shelters that have benches to sit on whilst you wait. If you are in the wheelchair there is a special blue button on the outside of the bus to alert the driver to put the ramp down and the same inside when you want to get off. Even if you're using crutches most of the buses have the ability to 'kneel' so that they are at kerb height, and other users will generally offer a seat to allow you to sit. The trouble comes (as it often does) with the wheelie-walker. Mine is four wheeled, with a seat and a back bar. It isn't a wheelchair though, you can't push someone around whilst they sit on it. It isn't a mobile bus seat either, the breaks will hold it in place; but now with the extra weight of a person.

So, you are waiting for the bus (assuming that the bus hasn't driven off, because why would someone with obvious walking difficulties be approaching a bus stop at speed and waving). The bus arrives and hopefully kneels or a friendly bystander helps you get the walker on the bus. Assuming that it isn't one of the 25% where the poles and seats make it to narrow to access the wheelchair space from the front you make your way to that area. All going well you park up and sit down before the bus moves off.

But wait, the space isn't empty; there is a buggy in the way. Best outcome the buggy owner will try and shuffle so you can park up. Worst outcome they sit and stare at you and wait for you to try and fold/manhandle the walker into the far spot (obviously the buggy must sit right next to the owner. The fact that you clearly aren't able bodied and the bus has started moving is no reason for the buggy owner to exert themselves.

Worst case scenario, two buggies are taking the entire space. You aren't a wheelchair, so why should anyone try and fold the buggy; they were there first, after all. Again the fact that they are able bodied and you aren't is no reason that you shouldn't try and fold/move the buggy... even if the bus is moving off.

Even if all goes well, you may find by arrival that the walker is boxed in. Here we go again.

These are nowhere near isolated incidents. I'm a big bus user (4 routes pass the top of my street) and if I'm going out for more than a brief trip I always take the walker. I think that about 90% of journeys see me encountering some sort of problems.

Trains

Stations are easy to get to, there is usually a bus stop right outside. Given the above I'm quite often losing patience by the time I reach the station having dealt with the bus crowd. Here is what to expect from my local railway (SouthEastern).

Charlton station is reasonably accessible. If you are arriving from the London direction there is a gentle slope which will deposit you opposite the bus stop; although if I'm going home, unless I want to jay-walk I then have to walk up the hill to the crossing and back down again. After a long day out this is often the final straw! If you are going towards London there is a lift down to the platform. Providing it is working, two occasions in the last six months I have found it out of order. This means you  have to leave the station and walk down the hill of Delafield Road to gain level access through the car park.

Woolwich Arsenal station is proudly accessible - they should try it with weights tied to their legs and see how it feels. The signs tell you that from the footbridge through the gates there are 27 steps to platform level. I asked the staff where the lift was, and was directed to the adjacent DLR. Out of the station, down the ramp, into the DLR and then a good old walk to the lift. There is a second footbridge you see. No problem now, lift down to station level (we'll ignore the five minutes walk to get there).

Greenwich station, depends where you are headed. First bear in mind it is nowhere near the town centre. If you want to go there then get the DLR to Cutty Sark. Arriving from Charlton/Woolwich there is a level exit. Anything else you need to get to the DLR where the lifts are; 5 minutes walk back up the street (this includes getting to the opposite platform for a return journey).

Lewisham station, don't get me started. Impossible. No directions, confused staff; up and down hills and ended up dropping the walker down a short flight of steps to get to the lift level as I'd lost the will to wander around any further.

The other problem with trains is disparity of access heights and gaps between platform and train. You really have to rely on the kindness of strangers (which seems to abound on mainline rail) to help you on and off with the walker.

I have never taken the wheelchair on the train, and I can't remember the last time I went with crutches either.

Tube

So proudly accessible with its little wheelchair logos on the stations. Have you ever noticed though those little logos come in two colours - white means step free access from platform to street (fine for crutches and the walker) and blue is step free access from train to platform (pretty essential for a wheelchair). The first time I took the wheelchair on the tube we started at North Greenwich (blue logo) but there was actually about an inch difference (upwards) in level going to Wembley Park (white logo) the train is about six inches below the platform. Since then alterations have been made so if you get on in the right carriage there is level access. The labels from the Olympics at the new stations with platform edge doors have been replaced with permanent signs.

How about getting out though? The walker (and actually worse the crutches) and I have had reason to leave at Green Park. There are lifts... but they aren't anywhere near each other.Walking and walking. On one occasion on the way back to kindly station staff escorted me as they were so worried that I looked so tired I might fall down in the foot tunnels.

So, what have we learned. Lifts are all very nice; so are designated spaces and signs. But if people won't yield the space or help, if you have to walk for five or ten minutes to the lift... well that isn't accessible. If you are exhausted just from using the transport, that isn't accessible. Don't get me wrong, it's better than it was, but it isn't the solution. And I'm willing to bet, I live in London; I've probably got it better than most. 

Another relapse

Relapses suck. My particular brand are very trying. The worst ones afflict me simultaneously with extreme vertigo and upper and lower limb weakness. This means that until trial and error find the drug (if there is one) that will abate the vertigo being upright is downright unpleasant (and has on occasion led to vomiting). The limb weakness means that I can't walk anywhere (helped since the first such attack by the addition of the wheelchair and wheelie-walker to my life), I can't really use my arms (so thankful for Kindle and iThings; I mostly watch TV and sleep.

The net effect of this is, I certainly get enough rest (I vie with the cat for who sleeps the most). The less useful side effect is that I slowly stultify with boredom.

Since my first bed-bound relapse five years ago I now have additional worries. I only work part-time, so I don't make as much, and our contracts now cut our wages in half after 0sick days in the year. Every day stuck in bed is money down the drain... And due to the reasons above I get a lot of time to dwell on it!

Staying positive, the drug they gave me for the vertigo works (first choice lucky) and I am feeling better than I did two and a half weeks ago.

It hasn't helped that during the same time I also had to have surgery on both toes and two fillings. At least that is all out of the way... hopefully the enforced bed-rest is helping my toes heal quicker.

Cooking with gas!

Last week I bought a 'perching stool' for the kitchen. This is why disabled people need the Disabled Living Allowance. These things aren't cheap. What it means though is that I can cook again.

Not being able to stand long unsupported means you can't stand at a worktop or a hob to chop or cook. You can't stand at a sink to wash. I had a wooden stool but it was too high, and because it had no back I was never sure if I was safely on the stool or about to fall off.

Can cats use it too, eggs up there!

Folds away for small kitchens

In action

Just the right solution

Me - cooking again

Curry for dinner

Sadly the much anticipated bath-stool, despite careful measurement, is too big for the bath and will have to go back. I will not be defeated. All the kitchen standing problems apply double for the shower... and because of stupid stud wall no rails can go in the bath / shower.

More steroids... and a rant

As usual the 5 day intensive course of the evil blue tablets did little other than give me chronic insomnia, put me in a foul mood, make everything taste bad and make me smell. Thanks to the Better-Half for suffering me.

Today we move to the endless three week tapering course. Not so bad tasting and not so insomnia provoking my GP assures me... although may lead to excessive euphoria.

I am now taking so many tablets I had to buy a new organiser! This morning there will be 18 (5 types), at lunch 4 (2 types), in the afternoon just 1, and at bed time another 5 (3 types). That is 26 tablets of 7 varieties... shake me, I rattle.

I'm hopeful as I write this that this us the end of insomnia. I'm hopeful the steroids are working on bits I didn't know were wrong, so even if I don't notice an improvement there is one. I'm hopeful that no bad effect will come from the Avonex suspension. I'm hopeful this is the longest relapse ever and remission is just around the corner.

If not I have been inspired by the Paralympians and my many Twitter friends - and I will redouble my armchair activist efforts to help those who are struggling (with me) to make our voices heard.

My MS Week

This Wednesday I went to see my Neuro. Generally these days this happens once a year, so I hadn't seen him (apart from passing in corridors) for a year. It was a warm sunny day, and I was almost late, lucky he was running late too. The heat and the extra sitting down meant when I was called I need help to get out of the chair and shuffle into his office. 

His first question 'How long have you been like this'. To be honest, I wasn't sure. To me it has been a slow decline. When he asked if I had been treated with steroids I told him as much; apart from my left hand suddenly joining my right hand in numbness and my on-off love/hate relationship with bladder and bowels the walking as been a slow descent into Ataxia hell. That and the numb/pain thing (oddly called anaesthesia dolorosa). 

His immediate (and predictable) reaction was to suggest Tysabri or Fingolymod. Old and tired conversations. I refuse to take these drugs until they have a little more history behind them and a better safety record.

His next concern was that my course of relapsing/remitting MS has moved to a course of secondary progressive MS. Despite the slow relapse free decline that wasn't a thought that had really crossed my mind. It is hard to tell if this is what has happened. First course of action, suspending the Avonex. I guess we find out if it was actually working or not. Next course of action, a course of one week (horrid blue) steroids. If nothing happens then I get a three week tapering course. If no improvement occurs this leads to the possibility that we have moved to secondary progressive. It's all a bit up in the air, it's all a bit 'we don't know'.

I sat in the corridor and waited for the buggy to go to the pharmacy. Wept a little weep and then looked up the Secondary Progressive course and found out that it might not be as bad as all that.

And an online friend gave me the following excellent words:

People with MS can live in fear of the word ‘progression’. Being told they have SPMS can be just as big a shock as the initial diagnosis of MS was.

They can feel they have a completely new disease, and it’s no longer treatable. It can feel like the end of the world for some.

But in reality, this is not the case. As a nurse, I reassure them that SPMS is just a name for one pattern of the disease – it doesn’t change the fact that their symptoms will still be treated and it doesn’t signal a sudden onset of disabling symptoms. They’ve still got the same disease, but perhaps very slowly changing.

Of course people need to know what type of MS they have, but we need to tell them in a way that’s not just clinical but takes account of their fears and concerns.

In the afternoon I had physio. This was better. We looked for a leg brace to help keep my left toe up so I stop tripping. I also am getting new crutches with easier to hold handles which will help me with my numb and painful hands.

Fatigue, my nemesis

Many people with auto-immune diseases (such as MS) suffer at one time or another from fatigue. This is not I'm a bit tired and need a nap, this is (like a car running out of fuel) I'm going to break down and stop - no matter where I am or what I am doing.

Recently the fatigue has been crippling me. I was (before my annual leave) back in the Monday to Thursday go to work, come home, eat, sleep and rest in bed all weekend routine. Life was passing me by and it was getting to me (big time).

I rang my MS Nurse to ask about fatigue meds. I'd tried Amantadine earlier in the year with no effect. I wondered if I could try Modafinil again. I'd take it before but it was so effective that it kept me up at night. Now I take so many meds at night that make me sleepy I wondered if it might 'trade-off'.

The nurse wrote to the doctor who wrote a prescription as I'd had it before. Collected from the pharmacy and first dose taken.

Last night I was exhausted when I got home, I had plans that involved doing nothing today. Right now I feel that I might actually have energy. If my body worked I think I could do stuff. Sadly my legs are still stiff and inclined to give out, I still have no balance, my hands are still numb and it took me a minute to come up with the word routine in the paragraph above!

Day one so a long way to go... first hurdle will I be able to sleep tonight?

Incidentally the possible side effects read (largely) like a list of MS symptoms!

No Go Britain?

Yesterday I made a rare trip into London by tube. There was a lot of discussion in the run up to the Olympics about accessibility issues in London. I had some issues last night but some of these were caused by the Games themselves. In other areas steps seem to have been taken. Are these permanent or just making London look good for its visitors?!

Before I left yesterday I decided that given the likely crowds and my destination (a bar) that much as I wanted the wheelie-walker I'd better make do with the crutches.

Getting bathed and dressed had already used up a good part of my spoon store so rather than get a bus to North Greenwich station I'd call a cab. Not £7 well spent. North Greenwich and The O2 (or North Greenwich Arena as the Olympics call it) has been over-run. LOCOG you owe me that can fare!

The first problem is that unless you are a bus you can't get near the station. My driver made sterling efforts, but despite this the nearest we could get was a car park nowhere near the station. I then had the equivalent walk (and a bit more) that I hadn't taken to the bus stop back to the station. Legs on the way to giving out.

At the station I discovered that horror of horrors the cab rank I had earmarked for my journey home had been turned into some VIP drop-off. The cabs were, it would seem, somewhere back where I had just come from. Cue muttering and more muttering from me.

I navigated successfully to the platform via two lifts and happily a terminating train was about to head back out. That guaranteed me a seat at least.

At London Bridge I headed to the lift at the far end of the platform. Just to demonstrate how accessible the tube is there were stickers on various doors advising where to get on for level access at stations like Green Park (train above platform) and Wembley Park (train below platform). Are these permanent aids to get on and off the trains or just for the Games? If permanent then perhaps keep the signs? We are SO accessible for the Olympics, but other times - well the wheelchair and I have personally suffered "how to get out?" at Wembley Park.

I had reached ticket hall level. Chaos of people everywhere. The exit I wanted was marked 'no entry' and I was being directed off on a route march. My legs were again about to give out and I was desperate to sit down. I asked the guard if I could please come through the short route. For once red-tape lost and he let me through (sometimes I think they can tell you might make a scene, or even worse cry!).

I stopped for a re-charge and an iced latte in The Vaults. Next stop main concourse level. The lift is out of commission (due to the ongoing refurbishment) so I used the escalators. I presume there was a contingency plan if I had been with one of my wheeled aids?

London Bridge is halfway through its Shard related regeneration. This means there are hardly any benches - no good for the infirm who need regular rest breaks. I had lost where I was to meet my friend in the station redesign but eventually navigated many barriers and found the old bit and platforms 1-6. The usual exit was shut. Have they put in lifts at the middle platform exit otherwise anyone with mobility issues is in trouble as the footbridge didn't have them when I was there six months ago.

We had a great evening out. At the end one friend went off to the mainline trains and my other friend and I headed back to the tube. The lift at the Borough entrance takes you to
the Northern line. We realised just in time!

The tube was, predictably, busy. By some fluke my pregnant friend and I both got seats. Back to North Greenwich. I had decided against the route march to the distant cab rank, opting for a bus. Of course my choice is limited now as one of the buses I use is on diversion. Correct bus boarded, and a kind lady offered me her seat.

Home, exhausted.

The attempts to make the Olympics easy to navigate and accessible mean that regular travellers may find extended journeys that are less accessible than usual. I hope that they take away some of the lessons though which would improve the tube which to me is mostly a 'no go'.