NYSTAGMUS AND DRIVING
By John Sanders
This article first appeared on nurseseyesite.nhs.uk in May 2006.
Most people with nystagmus can drive – yes or no? If you live in the UK, the answer is likely to be no. To drive legally in the UK, you must be able to read a vehicle number plate at 20.5 metres. Some people with nystagmus – we do not know what proportion – can do that and drive safely. However, most people with nystagmus who contact the Nystagmus Network cannot read a number plate at that distance and therefore cannot drive legally.
On the other hand, if you live in the US and have nystagmus, you are much more likely to have a driver’s licence, because the vision requirement for driving in most US states is much lower than it is in the UK. Drivers tell me that road conditions in the US are generally very different – in particular a lot less crowded than in the UK -- so the lower vision requirement may well be justified. However, I live in the UK and this article is for a UK website, so from now on I’ll stick to the situation in the UK.
DIAGNOSTIC DREAD
The possibility that their child may not drive is one of the biggest concerns parents have when they learn that he or she has nystagmus. They find it hard to imagine how their child will manage in adult life. Will he/she be able to get a job? How will he/she do everyday things like go to the supermarket, take the kids to school, visit friends and family?
In my experience, there is no single answer, since we are all different. Some people are not bothered by not driving. Some (possibly the majority) find it mildly frustrating and an occasional inconvenience. For others, not being able to jump in a car, turn on the engine and drive where they want is a major problem.
I’m fortunate – for me, living without a licence has never been a problem. Knowing that I can’t drive, I’ve simply taken that into account when choosing where to live and what to do. I’ve mostly lived in cities with access to public transport. Also not driving has its advantages, as this list -- compiled with the help of Visual Impairment support teachers in Gwent -- shows:
• Can’t be a taxi driver for children
• Environmentally friendly
• Far less stress
• Less responsibility
• More exercise, so it’s healthier
• No need to be designated driver
• Saves money
• Use travel time for other things
• You meet more people on public transport and have time to talk to them
And, of course, you can always have a drink when you go to a party.
A PROBLEM FOR PARENTS
However, not driving can and does present real problems for some people. One group which is often forgotten about is parents with nystagmus, and that usually means mothers. Travelling with children is rarely easy. Travelling on public transport with young children can be a nightmare.
In addition, the journeys parents have to make are constantly changing as their children move through different schools and take up different activities and interests. So, it’s unlikely that you will live somewhere with convenient buses and trains for everything – primary school, secondary school, shops, doctor, after school activities, etc.
Sooner or later you will encounter the “impossible journey” -- three allegedly interconnecting buses on a Sunday morning for example. As a result, you or your child will have to give up some activity that others take for granted, or miss out an event which is “only” five miles away, but could just as well be on the moon if you cannot drive.
DRIVING DESIRE
Teenagers too take some convincing of the benefits of not driving. They see their friends learning to drive and find it hard to accept that the law bans them before they even have a chance to turn the ignition key. You only need to glance at the discussion boards on nystagmus websites in the UK, USA, Germany and France to see that this is a universal problem.
After all, most people with nystagmus can see well enough to get in a car, get behind the wheel and drive off. Moreover, many can nearly read a number plate at the required distance. So, is that 20.5 metres rule an outdated regulation that is unfairly stopping many of us from driving?
Based on my own experience and from talking to others, my guess is that in most cases the answer is probably no. In other words, if you can’t read a number plate at 20.5 metres, you would probably not be a safe driver.
But that’s just my opinion. So I asked the Gwent VI support teachers what they thought. They came up with the following suggestions as to why most people with nystagmus would be a danger both to themselves and to others:
• Can’t read road-signs
• Can’t judge distances
• Can’t judge speed
• Can’t see the whole picture
• Reflexes not quick enough
• Stress would increase “eye wobble” and therefore reduce vision.
• Strong sunshine/glare may make vision poorer -- glare
• Unpredictable things – road works, temporary signs, even on familiar roads
• Vision even worse away from null point, increasing risk to pedestrians, cars, cyclists
Some of those points need a bit of explanation. Firstly, most people with nystagmus have a “null point” or “null region” where their eyes move less and vision is better. Of course, the downside is that away from the null point, vision is worse. Secondly, stress makes nystagmus eye movements increase and therefore reduces vision. Thirdly, there is evidence to suggest that we need more time than people with normal vision to see things.
MAYBE…
But what do young people themselves say about driving? Well, here are three comments from the UK Nystagmus Network website. They represent a range of opinions, but all are from individuals who in legal terms fall into the category of being border-line for driving. The first is from someone who does drive:
“I am 23 and I have nystagmus and am short sighted. I was able to read the number plate on my driving test, but I am finding some situations worse than others. I am fine driving around town in the daytime. However, my nystagmus seems to be a lot worse in the dark, so I avoid driving then as I don't really feel safe. Also for some reason it seems to be worse on motorways and dual carriageways as well. Not sure why this is. Maybe it's the speed or volume of traffic?”
The second comment is from someone who used to drive, but has given up:
“I tried driving some years ago (and) passed the test. However, I found driving in fast moving traffic terrifying. I believe that it is because we must focus more slowly than people without nystagmus. In the end I decided to call it a day and returned the licence to DVLA. A friend commented ‘you are much happier now that you've given up that car.’”
The third is from someone who thought hard about driving and decided against trying:
“I could maybe pass the vision test -- if conditions were perfect – light, good letters and numbers, etc. But even if I could, I don't think I would trust myself enough to do it. There would be too many situations where I know I could have difficulty – rain, dark, long journeys, etc. Also, I would be concerned about my peripheral vision, which I know is less than average. Public transport and pub for me!”
© John Sanders, May 2006
Email: John Sanders
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