Walking with Woody: Barriers to mobility after severe sight loss

In the last of our four posts in the run up to Saturday’s workshop, Shona Black describes her experiences getting around with a severe sight impairment and how our street design and other can make it harder than it ought to be. Our previous posts were from Sally Hinchcliffe, on her eye opening experiences over the summer, and Kirsty Lewin on how her bike is her mobility aid, and Ken Talbot on the freedom (and challenges) of handcycling.

Walk Cycle Vote: I walk, I cycle and I vote. I am also visually impaired or I was last week …this week the politically correct term is severely sight impaired (I think). Anyway I can’t see very well and I have a Guide Dog called Woody. He is gorgeous and my best friend. He is a Golden Labrador/Retriever cross. He is nearly seven years old, a great worker and behaves most of the time. he does have his naughty moments. This only makes him more endearing in my eyes.

Shona crossing the road with her dog Woody
Shona with her dog Woody

While Woody and I are out and about we encounter some difficulties along the way. Some of the worst offenders are cars parked on pavements which force us to go into the road. This puts us both in danger. Wheelie bin day is a nightmare as they are left all over the pavements and again this can mean Woody has to take me into the road to avoid them. At least with wheelie bins they are big enough for me to see when up close.  Another problem is the food waste bins which are small enough for me to fall over and even if people leave them in sensible places the wind can blow them anywhere.

I enjoy walking around with my dog and have an amazing feeling of independence and freedom.  On the other hand going out with my cane is the opposite. I really don’t like using a cane, however there are times when the dog is sick for instance or I am on holiday or somewhere I haven’t been able to take him for some reason when the cane is my only alternative.  My dog will take me round street furniture, scaffolding, roadworks, etc however with the cane I have to find my own way around. I often feel like I am in a pinball machine. I must admit I do get a little too much satisfaction and maybe strike out with my cane a little harder than necessary when I come across cars parked on pavements.

Shona and her tandem
Shona with her tandem

I am also a cyclist and love to be out on my tandem. This gives me an enormous sense of freedom and it is so great to be able to get out in the fresh air (obviously out of the city) and get exercise.  I do get scared when cars pass too closely and get really upset when cars are parked in cycle lanes forcing us into traffic.  As both a cyclist and a walker I feel entitled to say how annoyed I get when people on bikes go  flying past my dog and I on the pavements. Both the dog and I get a fright and there is no need for it. I actually don’t blame some kids for being on the pavements as the roads can be terrifying, however it would be really nice if they slowed down when passing not only my dog and I but other pedestrians. Dismounting would be even better.

There is all sorts of raised paving which is meant to help people with sight loss navigate streets. I for one don’t understand which patterns mean what and I know that the planners don’t either as they are not consistent. Also, I’m not sure if there is a secret with regards to this paving…i have been registered blind (now severely sight impaired) for 25 years,  trained with 5 Guide Dogs and had 3 courses of long cane training and in all this time no one has explained what the meaning of the pavement markings are. Maybe there is a course I need to go on that nobody has told me about.   Another huge  problem people with sightloss are encountering is shared surfaces where cars and pedestrians use the same area. The flaw is that people are supposed to make eye contact with the drivers. Can you guess how this could be a problem? Another issue is the new silent cars.  Really, how is that meant to work for us?

Shona is a resident of Edinburgh and very independent and active. However, in her day-to-day life she comes across many barriers which can impede her mobility. 

Freedom on Wheels: Why cycling infrastructure design needs to take account of handcyclists too

In the third of our guest blogs in the run up to Saturday’s workshop, Ken Talbot explains how unthinking design can lead to barriers which could prevent many thousands of people from true freedom of mobility. Our previous posts were from Sally Hinchcliffe, on her eye opening experiences over the summer, and Kirsty Lewin on how her bike is her mobility aid.

Super KenFreedom: That’s what mobility is. In the years that I’ve been handcycling and coaching handcycling I’ve met many people who say that handcycling is freedom. The sense of freedom is one of the most amazing feelings you can ever have, and when it’s taken from you it can be one of the most restrictive burdens you can experience. But, getting it back: that is truly stunning.

I’ve seen the evolution of that freedom. As an able-bodied person, I had an industrial injury where my mobility became more and more limited, and continues to do so due to Complex Regional Pain Syndrome. I’ve evolved from being able to walk, run, and ride a bike, to using a walking stick, then crutches, and then using a wheelchair. At each transition I had to reset my way of thinking about my ability and where I could go and what I could do, and it’s surprising how much mental energy that takes, and how often I got it wrong and get stuck.

But the problem with getting it wrong and getting stuck is rarely whether or not I can physically get somewhere under my own power. Sure, steep hills are a problem, but the big problem is the barriers that I, and others like me face as disabled people. In a wheelchair, a steep ramp, steps(s), uneven surfaces, and a lack of dropped curbs can all limit basic access. And these are all things that, when I was able-bodied, I didn’t give a second thought to because they didn’t slow me down at all.

Mountain Handcycling
Mountain handcycling

A few years ago I took up handcycling and I went from that restrictive burden of being disabled to finding freedom all over again. But in the years I’ve been riding I’ve often had to give up that freedom again.

As a handcyclist, when I and my riding colleagues all over the country are in our bikes, these become our wheelchairs; and as cyclist, we are presented with even more challenges to accessing routes and paths. The bikes are low to the ground and can become grounded on seemingly simple objects such as steep or sharp road transitions and speedbumps. They are long and have exceptionally large turning circles so tight corners and chicane gates can prevent access. Similarly, handcycles are wide so bollards can also prevent access.  And kissing gates, latched gates or any other obstacle that requires anyone to be able to walk or lift their bike… those are out of the question when you can’t get off and carry your bike. Even reaching the height of a button at a pedestrian/ cycle crossing can be impossible depending on your disability.

Ken on his handcycle
Ken handcycling

So, why would this be and who are handcyclists anyway? Handcycling is very much like traditional cycling except that you are sitting in a recumbent position and pedal using your arms and hands. People who generally take up the activity include (but aren’t limited to) those with paralysis, amputees, individuals with  arthritis, brain injuries, cancer or people like me with severe chronic pain. And why do people take up handcycling? Pleasure, socialisation, fitness, rehab, commuting… in fact, handcyclist usually ride for the very same reasons as any other cyclist, we just pedal differently.

But the nature of our bikes and our disabilities, in combination with certain barriers in infrastructure design can often prevent us from cycling just as any other person would. But why should be concerned about access for handcyclists? Well, if you look at a small section of our riders you can find these stats:

  • According to Aspire, “Using the NHS’s own statistics, as well as data from other countries, the charities estimate that the number of people injured or diagnosed with a life-changing spinal cord injury in the UK is 2,500 per year, whilst the total number of people living with a spinal cord injury in the UK is 50,000.”
  • Between the years 1981 and 2013, on average 1,595 people had a lower limb amputation in Scotland.
  • 800,000 people in Scotland are affected by chronic pain. In particular with Complex Regional Pain Syndrome one of two variants affects 1.2 children (5-15 years) in every 100,000. In adults, while the figures are vague, there are approximately 5.5 – 26.2 cases diagnosed per 100,000 people.

But what do all these figures mean? Even after looking only at a small cross section of potential handcyclist, we can see that the figures mean that there are a lot of disabled people out there, and potentially a lot who are candidates for handcycling. Interesting too, potentially, any one of these conditions from paralysis, to amputation, to chronic pain could affect any one of us at some point in our lives. I never thought I’d have CRPS, nor did I even know it existed until I started to experience it. I’m certain my paralysed or amputee friends never thought they’d be paralysed or have to lose a limb either.

Why is this important, particularly with cycling and cycling infrastructure? With so many disabled people out there, it’s important that they, we, remain part of society though social activities and remain fit though physical activities and cycling is an ideal way to do it. It’s well know that cycling is less physically demanding than many other outdoor activities, and the endorphins generated are hugely beneficial.  Remaining both socially and physically fit is not only empowering but it has the potential of reducing the reliance on the NHS for further health complications as well. But equally importantly, if we build our cycling infrastructure to allow access to disabled people, we build it accessible to all people; able-bodied, elderly, and children. And if you happen to find yourself in a position like me, where in the middle of your life your freedom is taken away… if the cycling infrastructure is already in place you can find your freedom again without even thinking.

Ken Talbot is a two-time world record-holding handcyclist and handcycling advocate.

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.

Kirsty on her (non-electric) Brompton
Kirsty on her (non-electric) Brompton

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.

What do we mean by active travel for all?

On Saturday 19th October, We Walk, We Cycle, We Vote are running a free workshop, Active Travel for Everyone,  that will bring together cyclists, visually impaired people and wheelchair users to find common ground over what we want for our streets, towns and cities. Here, organiser Sally Hinchcliffe explains how it came about and why it’s so important.  You can also read her co-organiser Suzanne Forup’s take on her experiences here.

guide_dog_crossing

In recent years it has become well understood that if we want to see high levels of cycling, among people of all ages and abilities, we need to provide convenient routes that keep bikes safely separated from motorised traffic. However, this should not come at the expense of other vulnerable road users – particularly visually impaired pedestrians and the disabled. Even where designs have moved away from shared-use paths – which many pedestrians find intimidating to use alongside large numbers of fast-moving bikes (just as many cyclists don’t like mixing with fast and heavy traffic) – some recently built segregated cycle routes have introduced features which make it harder for others to get around. 

Scotland’s design guidance for cycling infrastructure is in the process of being updated. With investment in cycling schemes stepping up a gear, we wanted to understand what were the most problematic features of the sorts of cycle routes being built, to ensure that increases in comfort for cyclists don’t come at the expense of people who have the greatest need for safe, well-designed streets in our towns and cities.

Over the summer we brought together small groups of local cycle campaigners, blind and partially sighted people, and wheelchair users  in a series of events to try and gain a greater understanding of each others’ needs. Together, we explored the surrounding streets and then took what we had learned from each other into a group discussion concentrating on the areas of agreement between us. For some of us it was a massive learning exercise as we started to understand how difficult it was for our fellow participants to navigate features of our streets that we took in our stride. As cyclists, we have become used to feeling that the streets around us aren’t quite designed to meet our needs – but we are immensely privileged in many ways compared to our companions and guides at these workshops. We are grateful for their time and their patience!

Public art Inverness
Exploring Inverness – and some confusing public art

On the whole, what was encouraging was how much we did agree on. In particular, some areas stood out: 

  • We largely agreed that there was a need to reduce the domination of motor vehicles in our towns and cities, and especially private cars, while recognising that for many of the participants cars (and taxis for blind people) are important mobility aids, so removing access altogether is not always possible.
  • Our pavements (footways) need to be better: flat, wide, uncluttered and well maintained. 
  • All other things being equal, bikes, pedestrians and motorised vehicles each need their own, clearly delineated space. 

The key lessons for me, as an able-bodied cyclist, were:

  •  Kerbs are extremely important in how visually impaired people navigate – whether with a guide dog or with (or without) a white stick. No amount of tactile paving or colour contrast can fully compensate for the absence of a kerb.
  • Controlled crossings are the gold standard, not just for blind people. Wheelchair users also benefit from having time to cross as even with a dropped kerb getting on and off the roadway is difficult.
  • While zebra crossings can work for visually impaired people in certain circumstances (where traffic is slowing anyway and not too busy) they aren’t so useful for crossing bike paths because bikes are so quiet and there’s no audible sense of whether they’re stopping, slowing, or accelerating (unlike with motor vehicles).
  • The consultation process is just as broken for visually impaired / disabled people as it is for cyclists. Their objections are frequently brushed aside and they are having to make the same points over and over again. This is particularly important because they can’t simply ‘get off’ their disability the way an able-bodied cyclist can hop off a bike. Shockingly, in this day and age, some of our participants felt that large areas of their own cities were out of bounds to them, unless they had someone to help.

We also had to face some uncomfortable truths. In particular, as campaigners, we need to recognise and acknowledge that bikes do present a specific hazard or worry for visually impaired people because they are so quiet and no amount of quoting statistics or saying ‘what about electric cars?’ will make that go away. Just as we rightly recognise that telling cyclists to ‘man up’ or get training to deal confidently with traffic is not an answer, we cannot brush aside the experiences of more vulnerable road users. This can also go for people with other impairments, some of which may not be immediately visible.

We also have to acknowledge that some common – and cherished – design features of current schemes present particular problems, especially to visually impaired people: 

  • Continuous footways which do not make it clear when a side road is being crossed are deeply worrying to visually impaired pedestrians.
  • Bus stop bypasses make it difficult for visually impaired bus passengers to access their key means of transport. 
  • Cycle tracks which do not have a clear kerb separating them from the footway will bring visually impaired pedestrians into conflict with bikes, especially if the design of the cycle track encourages cyclists to go fast and/or are bi-directional (while remembering that kerbs bring their own problems to people in wheelchairs or with other mobility issues).

None of these issues are insurmountable, however. Decent design guidance, which takes into account the needs of everyone, should enable cycling schemes to be built that don’t impinge on the rights of the most vulnerable to get around. Indeed, with a little imagination and flexibility, we should create infrastructure that enhances our cities for everyone, whether they walk, cycle or wheel.

That is why we are inviting everyone who is interested in making our urban spaces work for everyone to a free workshop in Edinburgh on October 19th to start to find common ground. You can book your free space, and find out more, here.