Do visually impaired people (including those with nystagmus) support football teams? Yes, of course they do; they are no different to anyone else… or are they?

Imagine yourself at a football match, you’re sat in the stadium, intently watching the game. What do you do when a goal is scored? Jump up and start cheering?! (Well, I think that’s what most do)! How did you know your team had scored? You saw it.

Now imagine you have a visual impairment – your naked eye is unlikely to yield sufficient visual acuity to allow you to see the ball in play, you therefore have to rely on the commentary. Fortunately, it’s usually pretty good. However, the frustrating thing is, when at an actual game and the crowd starts cheering, you have to wait to find out from the commentator. The only trouble is, sometimes the people around you are too excited and soo loud, that you can’t hear!

Fortunately, you can get a good feel for the atmosphere and the tone of the crowd. Chris Bevan, BBC Sport Correspondent, went to a Swansea football match wearing a blindfold, in order to experience the match from the perspective of a blind person. His article about his experience makes a good read.

Fast Cars on the BBC's Top Gear

If you’re not one of the 350 million weekly viewers of Top Gear, then it’s pretty likely that you’ve at least heard of it. For those that don’t know, Top Gear is a BBC TV series about high performance cars – most guys I know are really into fast cars… but am I?

Now, most, if not everyone that knows me will tell you that I’m not really into fast cars. In fact, most will tell you that I’m just not into cars full stop. For me, there is one thing that gets in the way: nystagmus.

In the UK, in order to drive a car, you must be able to read a standard number plate from 20.5 metres (67 feet). Regardless of the degree to which I tried to kid myself when I was 17, nystagmus can put a dampener on ones hopes of driving. In my case, I’ve resigned to the fact that I can’t drive and probably won’t be able to drive for the foreseeable future. Obviously, I hope treatments will advance, but for now, I accept I can’t drive. There are however, some lucky people with nystagmus who can drive; I actually know of a reasonable number, so having nystagmus doesn’t exclude the idea completely.

Most people with visual impairments find the late teens very troublesome; around 17/18, everyone around you is learning to drive. It’s tough. Wherever I go, people seem to start talking about fast cars at some point and I’m just not interested. If I can’t drive, why should I be? The problem then is, you can feel like you’re shut out of an entire conversation – it’s a double edged sword.

You have to look on the upside though…

Not everyone needs to drive. Thousands of people who have driving licenses, choose not to drive. Take London for example, the majority of people use public transport on a daily basis – they have the buses and tubes to get around London. I imagine most would agree that trying to get somewhere in central London by car can be a nightmare. Oh, and we’d better not forget to mention the congestion charge starting at £9 per day! Finally, everyone has to pay insurance and for some new drivers, this can be in excess of £1,000.

Right, getting back on track… Top Gear – my perception, until last week, was that it was a TV series about fast cars – something I wasn’t interested in and generally shut out. Well, I watched part of an episode. Now, my view has changed.

It was humorous! It was funny! It wasn’t all just about fast cars and it didn’t make me feel too uncomfortable, the humour took away the reminder of my inability to drive. Don’t get me wrong, I’m still not massively into it, but the one episode I’ve watched was interesting and I’ll be more open to watching them in the future.

Having had conversations about this with other people with nystagmus, who also felt the same way, I would encourage them to watch an episode. See what you think… it might not be as bad as you think!!!

Find out more about Driving Eyesight Requirements in the UK.

Every year, the Nystagmus Network hosts an open day for anyone wanting to find out more about nystagmus. The details this year, are as follows:

Date:            Saturday 20th October 2012
Location:   Manchester

It’s a great opportunity for people to meet others in similar situations to themselves and to find out more abouve nystagmus. The event usually caters well for everyone; people with nystagmus, friends, family, teachers, medical professionals and researchers. There are usually presentations covering research into nystagmus, the social aspects of having nystagmus and how to support people with nystagmus.

The general feedback is that one of the most rewarding things about the event, is meeting others with nystagmus or others in the same situation, e.g. other parents. There is a lack of available information and this annual event, is a key opportunity for learning more and asking those ‘dumb’ questions – everyone’s happy to talk about it! There’s also researchers and professionals on hand!

Keep an eye out for further information; you will need to register in advance to book a place.

West Brom’s Steven Reid raises money for nystagmus again! Great to have some high profile interest in nystagmus!

NN press release – 28th February 2012:

Not only did his team win on Saturday but West Brom fan Mark Hayward topped the weekend off by winning the framed shirt worn by Steven Reid in the Baggies victory at Wolves.

Steven Reid Raffles Match Shirt for Nystagmus

Steven Reid donated his shirt to raise money for the charity Nystagmus Network, a charity which supports people with the complex eye condition nystagmus, because his young son Harry is affected by the condition and he is hoping to give children like him a brighter future.

Previously Danny Ray from Surrey was the highest bidder for one of Steven’s Millwall shirts through an auction on Twitter. Since opening an account at http://Justgiving.com/Steven-Reid12/ family, friends and supporters have donated over £4,500 for Nystagmus Network.

Richard Wilson, chairman, Nystagmus Network, said:

“Congratulations to Mark and Danny, we can’t thank Steven enough for his support. We are a small charity and every penny counts and will be put to use for the 1 in 1,000 people with nystagmus.”

Nystagmus Network encourages research into and raises awareness of nystagmus (which is characterised by involuntary movement of the eyes). Earlier this year the charity gave a grant of £8,000 to a research project at the University of Leicester. We also have a range of resources for schools and hospitals to help parents and their children understand what it is like to have nystagmus.

For more information about nystagmus and the Nystagmus Network contact; John Sanders, Information and development manager, tel: 029 2045 4242 or 0845 634 2630, email: john.sanders@nystagmusnet.org web: http://www.nystagmusnet.org/

A note from James:

The Nystagmus Network is reliant upon fundraising and donations. I’ve seen first hand, the massive difference it can make. Research is expensive. Fact. Providing training, support, facilitating research and raising awareness require time and effort, for which NN has volunteers and an employee. If you have time on your hands and can volunteer or if you fancy raising some money, check out their website to get involved!

Some people think that nystagmus can ruin someone’s life – I dispute that! I acknowledge that having nystagmus makes life a little more trying than it might be otherwise; full of small hurdles, but none too big to be overcome.

Does nystagmus prevent people from achieving success? No!

Sometimes those hurdles don’t even exist, sometimes they do, but with the support of family and friends, I’m sure anyone with nystagmus can succeed above and beyond their expectations!

James about to descend 15,000ft back to Earth - skydiving!

Some examples of where people with nystagmus have been successful:

• Running races – 5km, 10km, half marathons and full marathons
• Sailing
• Fishing
• Actors/actresses
• Surf instructor
• Receiving employee of the month awards
• Sky diving
• Popular band members (e.g. Black Eyed Peas)
• Qualifying as a teacher

Do you have a photo representing success? Care to share?

I would like to start building a collection of photos representing the success of people with nystagmus. See above for an example of me sky diving. If you have a success photo that you are happy for me to share, then email it to me at webmaster@nystagmus.co.uk, along with a caption and I’ll make use of it!

Ok, I admit it – I’m a man with a passion for gadgets and more specifically, electronics. Interestingly enough, there is one simple gadget that sometimes, I wouldn’t want to be without – my monocular.

My Monocular

For those that don’t know, a monocular is like a miniature, lightweight telescope. Monoculars are used by many people with visual impairments to help see distant objects.

I have had my monocular for a number of years, but it’s only recently that I have begun to appreciate it. (I don’t like to appear ‘different’ and can be quite stubborn at times). At the end of the day, I guess you have to go over the potential embarrassment factor at some point!

So, what is it good for?

Travelling – recall the departure boards at your favourite train station or international airport. Now imagine that you can’t read the text on them (even when you’re standing as close as you can to them, generally getting a really sore neck at the same time. That’s no good when you only have minutes before it departs. Yes, you could ask someone and take the risk that someone is kind enough to tell you the right platform or gate number, but you don’t always find someone that’s co-operative, rather someone that looks at you as if you’re stupid. It takes confidence to ask and generally, that’s what gets knocked within seconds of asking the question! Thus, this is the perfect occasion to pull out a monocular! I find them great for this sort of thing.

Classroom/Lecture theatres – at my university, there was a lecture hall that had a capacity of several hundred students; it was massive. Now, my usual position was in the first couple of rows (not always the first, again, through not wanting to appear different). Sometimes, I would use my monocular, but there was a single main drawback: I had to keep it in my hand, moving it to my eye as I looked up and away again when I went to continue with my note-taking. Other than this, it was very useful, especially when all the seats near the front were already taken when I got there!

Seeing the view – of course, not just visually impaired people would find a monocular useful for seeing scenic views and specific objects in the distance. In fact, when I don’t have my monocular, I sometimes even take photos of distant objects/scenes, just so I can zoom in and take a closer look myself!

Where did I get it?

Interestingly enough, the NHS in the UK isn’t all that bad – my GP referred me to the local low vision clinic and I was given it there, along with some funky glasses (more about those in another post). If you’re not lucky enough to be able to get free low vision aids like this from your health service, a quick google should reveal a number of retailers that sell them.

Don’t be afraid of your appearance – once I got over the issue of using a monocular, it became a great aid. It’s definitely something I’d suggest people with nystagmus try out!

Viral raises funds for nystagmus

It’s not often that you find a researcher so passionate about their field that they volunteer to climb thousands of feet to raise money for the associated charity. Clearly, Viral Sheth is one of those rarities.

Kilimanjaro is the highest free-standing mountain in the world and is an impressive 5,895m above sea level. This is Viral’s challenge.

Viral is a member of the nystagmus research team at Leicester University. The team is well known throughout the world of nystagmus for it’s varying research into the eye condition and particularly renowned for it’s research into the use of drugs to alleviate the symptoms.

The University has been fortunate to be awarded a number of research grants from the Nystagmus Network and now they are doing their bit to help fund future research.

“On the 5th January 2012, I will be embarking on my journey. It won’t be easy as I won’t be able to shower for at least a week, I’ll be living off cold baked beans and tins of sweetcorn, I’ll have no access to the Internet so won’t be able to keep updated on Leicester City’s progress up the Premier League (!) and I anticipate my big ol’ clown feet to be coated in bruises and blisters!” – Viral

Research isn’t cheap; many research projects, including the drug trials that have been taking place at Leicester cost tens of thousands of pounds.

Perhaps Viral’s efforts will bring us one step closer to a viable treatment…

GOOD LUCK!

• To support Viral, visit his JustGiving page
  

• Interested in raising money for nystagmus? Check out the Nystagmus Network’s fund raising page.

The Nystagmus Network annual Open Day has come around again – it’s next Saturday (22nd October). Each year, the UK based charity hosts an open day where they bring together people with a stake in nystagmus, from around the country. In some years, people have even flown to the UK for the weekend from distant parts of Europe.

I highly recommend attending if you can, for the following reasons:

• Meet real people with nystagmus, their families and friends
• Meet professionals, discuss benefits, support etc
• Find out about other people’s experiences
• Talk to the people at the forefront of nystagmus research

To find out more or to book tickets, visit NN’s Open Day page.

Last weekend, one of the nystagmus.co.uk forum‘s main contributors, Larry, started a topic entitled ‘Spam sandwich‘. The topic discusses some of the spam issues we have been experiencing behind the scenes on the forum. On most websites that allow users to register or make posts, you will almost certainly be faced with a CAPTCHA.

CAPTCHA – Completely Automatic Public Turing test to tell Computers and Humans Apart

Traditional alpha-numeric CAPTCHAs are difficult to read

For those that don’t know, the most common CAPTCHA is generally a computer generated series of letters and numbers, which are frequently distorted in order to prevent ’spam bots‘ from accessing forums and other interactive services. Sadly, for most people with nystagmus (and other visually impaired surfers), they make it impossible to register on some websites!

Whilst reading about CAPTCHA techniques, I found a very disappointing example – one where the user is asked to trace around a silhouette in an image. Here is an example. I tried this and failed 2 out of 4 attempts. Something tells me that it’s not just the visually impaired that would find this difficult. One user group that developers often forget about is those with cognitive disabilities.

Fortunately, some web developers have thought about the visually impaired. reCAPTCHA is such a considerate project. Whilst the style of CAPTCHA is the traditional one, it provides an audio version of it, thus allowing even blind users the ability to pass the challenge. This is still not an ideal solution.

As the the acronym suggests, CAPTCHAs do not necessarily need to be an exercise of trying to decipher the characters in a distorted image or indeed enter characters named in an audio file. A CAPTCHA could be as simple as asking a relatively simple question, like ‘How many eyes do humans have?‘. The problem comes with composing the questions because our forum employs this type of CAPTCHA and spambots still manage to register by the dozen!

Question and answer style CAPTCHAs are a great solution; they are accessible. The questions need to be composed to ensure that the range of answers are kept to a minimum. Questions need to be such that 99% of users will respond with the same answer. Preferably, answers should not be numbers and kept to a single word. It’s difficult.

At the end of the day, CAPTCHAs exist to enhance the user experience by maintaining a friendly environment, however, for some users, they can achieve quite the opposite!

If you have any ideas for suitable challenge question and answer sets, please contribute them to the ‘Spam sandwich‘ forum topic.

The majority of us tend to get our hair cut on a regular basis. We either visit a hairdresser or have one come to us. I tend to go to a hairdresser and when I find one I like, I tend to stick to it! 

I grew up going to the same hairdresser on more or less a monthly basis. They were always very good and I never had any complaints. They knew my name and most importantly, they knew my haircut. I never had to describe how I wanted my hair cut – if there was someone new, another would explain it to them. All I needed to do was walk in! 

When you're in the chair, can you see what's in the mirror?

I have moved homes twice in my life, and each time I needed to find a new hairdresser. Suddenly, my ‘comfort-zone‘ was gone. In both instances, I found one and stuck with it, however, something that I’d never really given importance, instantly became very important! 

What happens when the hairdresser believes they have finished cutting your hair? They want to show you right? Sure, there is generally a mirror infront of you, but I can’t see my hair in enough detail to tell whether or not I’m happy with it. I can obviously tell there is something wrong if I can see scalp, but otherwise, it’s very difficult to tell! 

At the end, the hairdresser will often hold up a mirror behind you, with the objective of obtaining your approval. Obviously, we are meant to look in the mirror infront of us and see the image in the mirror they are holding up, again, I can’t see that well enough! 

So… what do we do if we are visually impaired? 

I would be keen to here your thoughts… post them in this topic on the forum.