Chronically Ill Kat

I started using a wheelchair around about a year ago. Since then, I haven’t really been able to use it all that much, other than for trips to the supermarket and walks in the nearby area. But recently, thanks to living in the EU and being fully vaccinated, I was able to take myself and my chair on a bit of a trip. And, what originally started as a short trip to visit a good friend in Hamburg, Germany – so a simple a train ride away – somehow became a spontaneous, week-long adventure on various trains and boats through Germany, Denmark and Sweden. All shockingly unplanned! So, for my first time travelling with a wheelchair, this was a bit of a baptism by fire – and we certainly learned a lot.

Wheelchairs are great

One of the biggest discoveries we made whilst travelling with a wheelchair is that, wow, wheelchairs are awesome! Usually when I go away somewhere, it’s a bit frustrating because I am not actually capable of seeing all that much. Or, I spend the first two days walking around far too much, not taking too much in, and then collapse for the rest of the trip. This time, not only was I able to go out and about every day, I was also able to see so much more of the places I was staying. I mean maybe it isn’t so surprising, but walking takes a lot of energy that I don’t have. When I’m using the wheelchair, I can conserve quite a bit of extra energy. Of course I still overdid it and still did way too much – but too much with a wheelchair is so much more than too much without one.

On top of this, with POTS or ME/CFS, just being out and about, not to mention walking, takes so much energy that you don’t always have much left to actually look around. Usually, without a wheelchair, I find that I focus on finding the next seat, or just on staying upright ans my vision gets a bit fuzzy – in fact it’s very much the feeling that you have when you have a fever or a virus! I didn’t even realise how much I normally miss, until I started using my chair, and I realised that I can actually almost sit back and relax and look around me again. Instead of wasting energy on trying to stay upright, I was able to enjoy the beautiful places we visited. And that was incredible – something I appreciate so much more now that I realise how much I have been missing!

Some added bonuses of travelling with a wheelchair, besides the obvious energy saving issues include: a much higher chance of getting a hotel room upgrade (sadly often because the wheelchair doesn’t fit into the smaller rooms); the chance to use a toilet in any cafe/ restaurant/ museum you ask at, even if they have signs claiming that their toilet is only for paying clients (yesss its probably because of ableism but I’ll take it!); and a seat even when there are no benches around!

Butttt… travelling with a wheelchair is faffy

When I say that travelling with a wheelchair is faffy, sadly I don’t just mean the literal extra hours that you have to spend waiting for the lift to come to your floor, or walking around the train station looking for the lift, I mean that most of the world is still incredibly inaccessible to wheelchair users, and that makes so many aspects of travelling very difficult. I want to highlight some of the difficulties that we had, because some of them were things I hadn’t even thought about beforehand. To preface this, however, I am (luckily for me) fairly agile, so can get in and out of my chair easily, and walk where I need to – and my friend was strong enough to be able to lift the chair. So things that were doable but difficult for me might be impossible for others who use their wheelchairs for different reasons, or who use less portable wheelchairs.

Pathways and pavements

If you follow my instagram or facebook, you will already have seen this discovery, but let’s talk about path surfaces! Picture Copenhagen! There is a lovely river flowing right through the centre, lots of picturesque canals coming off on either side of it, boats moored everywhere and gorgeous narrow streets with colourful houses. And just to top off the idyllic picture – cobbles – everywhere. On EVERY SINGLE PATH. I can tell you now, as quaint and as cute as cobbles look, after this trip I now want to abolish them. Or at very least – as they did in some parts of Copenhagen – add a non-cobbled path in the middle of the cobbles for wheelchair users (or prams/bikes, anything on wheels really!). Whenever we took the chair over cobbles, I would either be rattled so much it hurt my neck, or I would really need a wee, or the wheels would get stuck in a gap, stopping the chair with a jolt, injuring the friend pushing me and nearly tipping me out of the chair. Needless to say, this obstacle only became harder to navigate when we had both had a beer or two!

As for drop kerbs, necessary for crossing roads and getting back on to the pavement, the less said about them the better. In many places there were no drop kerbs, or they were so steep and broken that they may as well not have been there. This meant either I had to get out of my chair every time we crossed a road, or my friend had to tip me backwards and use a lot of brute force (which for me is terrifying) – or we had to find another route. This made wandering around the city an adventure, which was all fun and games until we were doing it whilst hungry and overly hot!

Public transport

For the most part, we actually found that using public transport in many of the places we visited was both fairly accessible and easy, but sadly there were a few exceptions. Some of the issues that we faced were things like the fact that not every metro station has a lift (in Hamburg particularly), and even where there was one, it was not always working. Alongside this, several of the older buses and trams had several steps to get into them – and we were never offered a ramp, although for some of the buses and trams I’m sure it would have been an option if we had known how to access it.

What this meant for us was that, most of the time, we didn’t bother asking for ramps or help. Instead, my friend (and wheelchair driver) folded my chair and carried it up the steps or stairs where that was necessary. This is obviously not such a great option and is impossible for many wheelchair users. However, it seemed less bothersome to lift the wheelchair up than to try and figure out how to get access. Ideally, any accessibility options, anywhere, should be displayed obviously so they are easy to find and use.

An example of excellent access was in many of the buses in Gothenburg: of all the buses we used there (so, potentially, all the buses), and in many of the newer trams, there was a lowered section for wheelchair users, a special button to press when you wanted to get out so the driver knew to stop for a little longer, and even a button to press which automatically put out a ramp for getting down and out of the bus. Not only this, but on all the information screens for the tram, it was clear whether the particular bus/tram arriving was a wheelchair accessible one or an older one with less access, etc. This is what I mean when I say wheelchair access should be easy to see and use.

When it came to trains, we also had excellent experiences with clearly marked, accessible carriages on Danish and Swedish trains. My only complaint is they were often also the accessible carriages for prams – which meant four hours of listening to babies crying!

The trains in Germany were, however, a different story. Not every train in Germany has a space to put the wheelchair. And by that, I don’t mean they don’t have a wheelchair seat. Even worse, they don’t even have a place to store a folded wheelchair. After walking up and down a long train, we settled for the only place we could find where the chair wasn’t completely in the way – in the restaurant carriage. But, very quickly, the guard on the train asked us to move it. She, however, soon also realised that we couldn’t store it anywhere else, so eventually gave us permission to keep it there! For the very same train, we had already asked at the ticket office for help lifting the wheelchair in and out of the train as I would be travelling alone and am not strong enough to manage the lifting myself. The answer to our request was no. We could only get help if we booked 24 hours in advance – which is pretty standard but does not account for disabled people suddenly needing to travel, on that day, by themselves – as was the case for me!

Getting inside buildings

To be honest, this one is still something I haven’t had much chance to experience. Given that COVID is still very much a reality, and the weather was gorgeous anyway, we didn’t really go inside anywhere other than train stations, hotels and supermarkets. What I did notice about the few places we went into, is that there are very few shops/ cafes/ restaurants that don’t have a small step of some kind to get in. And there are also very few places that leave enough spaces between their tables or shelves for wheelchair users to navigate the space. There are also a surprising number of hotels with excellent entry ramps, which then use them to display a lovely stone plant pot, or a bench – thereby rendering their accessibility completely useless! In the few places where we did go inside, we generally left the wheelchair folded up outside, to minimise the faff – a ‘luxury’ that many people do not have and should not be necessary!

Travelling with my wheelchair: will I do it again?

The answer to this is an absolute yes. Although it was disappointing to experience quite how inaccessible the world is to wheelchair users, and having the chair did add a lot of logistical faff, taking my wheelchair away with me enabled me to see so much more of the cities that I visited. I was incredibly grateful to have my wheelchair there and to be able to preserve my energy for things other than essential walking. I am lucky I can choose to leave it behind on days when I know it will hinder more than help, so it definitely added so much to my experience of travelling.

Despite this, this trip reaffirmed to me how far we still have to go so that disabled people can just live their daily lives. In a world that is built with so little attention to the needs of wheelchair users, and fails to provide even the cheapest adaptations (like ramps), it is no surprise that wheelchair users often feel isolated, unwelcome and a burden. Every time, when using my wheelchair, that I wanted to do something, I needed either to arrange it days in advance and plan it well, or I had to depend on a non-disabled friend to help me navigate that inaccessibility. Until we have much more access to the world, and the ability to move around somewhat independently, wheelchair users will always end up feeling excluded and burdensome. Access should not be so hard: it is, after all, a basic requirement for participation in the world!