When your bike is your mobility aid: Cycling with arthritis

In the second of our posts reflecting the issues raised by our forthcoming Active Travel for Everyone workshop, Kirsty Lewin explains how not every cyclist is able-bodied – or can easily get off and walk. 

You’ll have heard it said. Or seen it written. Bikes as mobility aids. If you’re fit, you might have wondered about the mobility issue. How can someone cycle a two-wheeler but they can’t walk? Surely that doesn’t make sense.  And why can’t they walk? Their legs are going around on the bike, aren’t they?  There are all sorts of health issues that result in someone being able to cycle but not walk. And one of them is arthritis. I have severe arthritis in one knee. It’s a result of my leg being out of alignment for ten years following a major incident with a lorry. My knee is not red or inflamed. It is not hot to touch. I have full movement – in fact I can touch my heel on my bum which is more than most of the population. But the pain, when weight bearing, is unmanageable. And the painkillers I took to try and manage the pain gave me gastritis. Which means I am now living with arthritis without pharmaceutical pain relief.

Cycling with severe arthritis is not necessarily pain free. But for me, it’s much less painful than walking. By cycling, I keep active and fit. It’s generally good for my mental health. It’s often a fun, social activity. And it’s my only way of getting around.  Buses are out of the question on a bad day. The walk to the stop and back is too painful. And a journey that involves two or more buses often takes too long. Buying a car is not a solution either. It’s not worth the cost and hassle.  And it’s not worth the impact on the climate and air quality. The bike, and in my case now, the ebike, is the most efficient way of moving through the city. But travelling around Edinburgh on a bike while suffering from painful arthritis is not as easy as it should be.

One challenge for us arthritis sufferers is trying to avoid exacerbating the pain. Putting my foot down on the road hurts, and putting it down suddenly hurts a lot more. In an ideal world, or a world designed for people who use bikes as mobility aids, there’d be seamless routes and infrastructure, routes that are segregated from motor vehicles, dropped kerbs, no barriers on paths, no narrow chicanes, and predictable careful drivers. There’d also be practical secure cycle parking by the entrances to all major destinations. And of course, there’d be cycle parking where I live, in a tenement. You’re guessing where this is going.

There is no ‘blue badge’ scheme for people who use bikes and trikes as mobility aids. This is despite the fact that the bike is cheap to run, non-polluting, and aids physical and mental health. This lack of foresight means that when I turn up at an industrial estate, or a public building, or a shopping centre, or a cinema or theatre or art gallery, there may be no bike parking at all, or the parking might be on the other side of a large car park, or a distance down the street. A painful walk is then required. Sometimes the cycle parking requires pushing the bike up over a kerb. There’s a major hospital in Edinburgh that provides this particular joy. When you’re using an ebike for health reasons, pushing 25 kilos of bike over a kerb is quite a feat.

I have been under a moving lorry with a bike. Naturally, this has left me with considerable anxiety when cycling in heavy fast traffic. Every day my knuckles whiten as drivers pass me too closely, an illegal close pass, but they rarely get caught. Operation Close Pass in Edinburgh has limited resources despite its best efforts. Drivers veer across my path to turn left, or they pull out of a junction into my path despite having looked straight at me seconds before. And they regularly run red lights as I move out onto the road urged on by the safe ‘green cycle’ sign that I’ve been patiently waiting for. Every sudden stop in these circumstances means a foot hard down and agonising pain through my knee. And every close shave is a physical flash of fear. Thumping heart and sweaty palms. It doesn’t seem fair to have to suffer that fear, just to get from one place to the next.

Sometimes I cycle on the pavement. I do this when I’m afraid of the traffic, or when forced to by roadworks. I do it carefully, and stop to let pedestrians by. I ignore ‘cyclist dismount’ signs. I have to. But I’ve been abused by some pedestrians. One woman in Portobello looked me up and down and said I didn’t look disabled. If I wear my knee brace, I get a more sympathetic reception. But pedestrians are right to raise an eyebrow. In the UK, bikes are not listed as mobility aids in the legislation. Technically I shouldn’t be on the pavement at all. But how else am I supposed to get around? Even on shared-use paths, things can be challenging. Walkers and runners with dogs can be unpredictable. Of course, most dog walkers are responsible and careful. But if a dog runs across my path, forcing me to swerve or brake suddenly, the pain brings tears to my eyes.

Why does any of this matter? Well, I’m not alone. Osteoarthritis affects around eight million people in the UK, and arthritis is the biggest cause of pain and disability in Scotland. The most commonly affected joints are hands, knees, hips and the spine. There is no cure for arthritis, but regular physical activity is recommended by NHS Scotland to manage symptoms, strengthen joints, and relieve stress. Cycling is a wonderful way of getting the required amounts of physical activity, although other exercises are required too, for example those that involve strengthening and stretching. But many people with arthritis will not cycle if they are frightened. Or if physical barriers make it too difficult. Or there’s nowhere to put their bike at their destination or even at home.

We often talk about designing cities for children. Or designing cities for people with dementia. Let’s add general disabilities to the list and, at the very least, meet our obligations for people with disabilities under the Equalities Act. And get on with it, not just talk about it. It took me over ten years to get one kerb dropped to access the cycle parking at an iconic public building in Edinburgh. On that basis I may only get another two done in my lifetime.

There’s some fantastic transformational work going on in Edinburgh to facilitate cycling and walking. This will undoubtedly result in improved access and experiences for many disabled people who choose active travel. However, it’s not city wide and many of the smaller projects that could make a difference now are still not getting done.  Cities that are designed and run for people who use bikes, trikes and adapted bikes as mobility aids to get around would be safe, practical, and fun for all inhabitants. What are we waiting for?

Kirsty Lewin is on Twitter as @KirstyLewin.