B4 logo

Discrimination against B4 athletes within International Blind Sport

Charities supporting people living with vision impairments, including the Nystagmus Network and the Albinism Fellowship UK, have signed an open letter from B4 International Blind Sports, outlining concerns about discrimination towards athletes classified B4 in international blind sports.  The letter is addressed to the IBSA (International Blind Sports Association) and the IPC (International Paralympic Committee).

Classification currently sees many athletes and sports men, women and young people with nystagmus classified as B4. This means that, whilst their sight is sufficiently impaired to prevent them competing fairly alongside fully sighted people, within the current regulations, they are unable to represent their country in any sport at international level.

We would argue that the B4 classification does not fully recognise the variability of vision or the impact of glare on people with nystagmus and ocular albinism. For this reason the letter includes the following:

“A frustration further compounded by the fact that visually impaired athletes have varying levels of functional vision, and the difference from B3 to B4 is, minimal in some conditions, and could easily be affected by external factors, such as tiredness, light and interpretation of visual cues.” 

B4 International Blind Sports have also set up a petition for anyone to sign who wishes to have blind sports classification re-examined.

Please sign the petition here 

Nystagmus and Driving front cover.

Renewing a driving licence

Here is the latest update from the DVLA regarding driving licence services.

As a result of the impact of the COVID-19 pandemic, Ministers at the Department for Transport have agreed to adopt a temporary measure to assist drivers in complying with the driving licence renewal requirements.

To make it easier for drivers who need to renew their photocard licence or their entitlement to drive, where their licence expires between 1 February 2020 and 31 August 2020, they will now have a 7-month extension from the date of expiry.

This means that they will not need to renew their photocard or entitlement to drive until 7 months after the original expiry date. The extension is automatic, so drivers do not need to take any action.  The driver record will show the current expiry date on the driving licence, the record will be updated once an application is made to renew the licence at the end of the extension period, when a renewal reminder form will be sent.

If a driver has already applied online to renew their photocard this will be processed as normal.

This extension applies to all full licence renewal applications including short period medical licence and lorry and/or bus renewals. It does not apply to provisional driving licences or where the licence needs to be renewed following a disqualification.

By law, all drivers must ensure that they always meet the medical standards for fitness to drive when driving.

Information about driving with a medical condition is available on GOV.UK .  If a driver has already applied to DVLA to renew their photocard or their entitlement, they can continue to drive while DVLA is considering their application, providing they have not been told by their doctor or optician that they should not drive.

Drivers with nystagmus do not need to notify DVLA of their condition, but they must be able to pass the DVLA sight test. For more information on nystagmus and driving, please download our guide here.

If you have any questions about driving and nystagmus which you would like us to pass on to the DVLA, please contact us.

A thank you card from the Nystagmus Network showing an image of 2 boys taking part in a team building exercise.

BBC charity appeal raises £8,000

Following transmission of the Nystagmus Network’s Radio 4 appeal, presented by Richard Osman, the charity has received universally positive feedback on the clarity of the broadcast’s message. One listener, in his 70s, said he had learned more about nystagmus in those 3 minutes than throughout the rest of his life. We have been contacted by several individuals saying that they were totally unaware of the condition previously or that Richard himself lived with nystagmus. We have also enjoyed unprecedented social media engagement. With transmission following closely after Nystagmus Awareness Day on 20 June, the appeal raised awareness of the condition to new heights.

In 2020, when most fundraising has ceased and people with nystagmus have been struggling with homeschooling, social distancing, shopping, lack of hospital appointments and isolation, the appeal has been a lifeline to the charity and the nystagmus community in terms of generating donations.

The total raised has reached almost £8,000 to help the charity extend and develop its support and information services. This means that, as eye clinics and high street opticians begin to reopen, patients and their families will have access to information about nystagmus. Clinic staff will be aware of their needs, thanks to training the charity is now able to provide. In September, when children return to school, parents and school staff will enjoy the benefit of accurate, up to date information about education support to ensure that all young people with nystagmus attain their academic potential.

We are indebted to our wonderful presenter, Richard, for kindly agreeing to voice our appeal and share his own reflections on living with nystagmus. We often tell young children that, with the right support, they can achieve anything, despite their disability. They can even become a famous TV presenter if they work very, very hard. Thank you, Richard, for the inspiration and thank you to everyone who responded to the appeal.

Trustees smile at the camera.

Trustee and volunteering opportunities

Are you looking for a new opportunity to give your energy, time, skills and talent to support a small charity?

The Nystagmus Network is looking for people who would like to help the work we do as a volunteer, or join us as a Trustee to guide and direct the charity’s work.

The skills, talent and experience we would be interested in are:

  • Fundraising
  • Volunteer Management/Networking
  • Corporate Law
  • Clinical Practice
  • IT and Web Design

For people considering offering their services as a potential Trustee, the minimum time commitments are one full Saturday four times a year, an evening or daytime phone call every 6 weeks, attendance at the annual Open Day and support for Nystagmus Awareness Day. Trustees have particular legal responsibilities under charity law.

If you have time to give us, then please drop us an email at [email protected] with a brief summary of how you would like to get involved and the skills and experience you have to offer. We will then be in touch.

We welcome interest from people with and without nystagmus.

The Nystagmus Network appeal page on the BBC Radio 4 website, showig a picture of Richard Osman and details of the appeal.

Missed the appeal? Listen again!

If you missed Richard Osman presenting the Nystagmus Network charity appeal on BBC Radio 4 at 07.54 this morning you can listen again now.

Listen again here

Make a donation to the appeal here

Huge thanks to Richard and to everyone for donating to the appeal. Your generosity will ensure that the charity can continue to support the nystagmus community.

A view of a street scene at sunset.

Wilson’s winning window

We are delighted to announce that 16 year old Wilson is the winner of our Nystagmus Awareness Day photography competition: The View from my Window.

Wilson is very pleased to have won a competition he didn’t even know he’d entered. Each evening Wilson sends home to his Mum a photograph of the view from his bedroom window at school. His Mum was so touched by the thought and Wilson’s beautiful photos that she entered one of them secretly in the competition and Wilson has won.

All entries were from adults and children were judged by internationally acclaimed photographer, David Katz.

David said: “It was a real honour to be asked to judge these wonderful pictures by fellow VI photographers.

‘The images were fantastic and show that VI photographers can take great shots just as well as anyone else. It’s not about how far we can see, it’s about what we see.

‘The image I have chosen shows that perfectly in every way.

‘Much respect to all those who entered.  Practice makes perfect. And huge congratulations to the photographer of the image I have chosen.

‘No Such Word As Can’t.”

Wilson wins a Nystagmus Network T shirt.

Shining a light in a woman's eye during an eye exam.

Research participation opportunity

People with nystagmus are being invited to contribute to medical research by sharing their experiences of accessing a patient information pack, designed to support people living with the little known and complex eye condition.

The team at the University of Sheffield behind the Nystagmus Information Pack would like your help to review the pack and improve care and information services for nystagmus patients.

You can take part by completing an online questionnaire from the safety of your own home.

More details here.

Richard Osman

Richard Osman to voice Radio 4 appeal

The Nystagmus Network is delighted to announce that it has been granted a BBC Radio 4 charity appeal.

The appeal will be presented by well known TV presenter, broadcaster and author, Richard Osman on Sunday 5 July.

Richard has nystagmus himself and says it is his “absolute pleasure” to be able to support the charity in this way. Although he enjoys a successful career, he explains that at school “I had to listen an awful lot”. He famously cannot use an auto-cue when presenting on TV and must commit everything to memory.

Hear Richard talk about the Nystagmus Network here

The charity is particularly thrilled to have Richard’s support with the appeal as he is something of a role model to children and young people who have nystagmus. They see him on TV and know that they too can achieve their ambitions if they work hard and get the support they need.

Richard’s success and high profile are also a source of great comfort to the many parents who worry what the future may hold for their visually impaired children.

The charity’s Information and Development Manager, Sue Ricketts says: “We are so pleased to have been awarded this opportunity to have a Radio 4 appeal. Many listeners will hear about nystagmus for the very first time from someone who lives with the condition himself. What better way to raise awareness?”

Every pound donated to the appeal will help the Nystagmus Network continue to support the children, adults and families living with nystagmus and provide them with the information they need to thrive.

The appeal will be broadcast on Sunday 5 July at 07.54 and at 21.25 and again on Thursday 9 July at 15.27 on BBC Radio 4

  • DAB BBC Radio 4
  • FM 92 – 95 FM, 103-105 FM
  • LW 198 Long Wave.

Picture of Richard Osman courtesy of Penguin Books

Please click here to donate to the appeal – thank you

Nadine smiles for the camera

Homeschooling and nystagmus

A Guest Post by author and nystagmus Mum, Nadine Neckles

So the world has turned on its head and what we once considered normal and safe has morphed into anxiety inducing, mask wearing, groundhog day feeling ‘normality’.

COVID-19 has changed a lot of what we do and how we do it, including how and where our children are taught.

2020 the year of vision, has been a real eye opener

Entering into lockdown I had big ambitions. I would replicate school as closely as possible. There would be structure. Each day, a bit of maths, English and therapy. My daughter, who has nystagmus, also attends a specialist school as she has learning difficulties and thus therapy is a BIG part of her curriculum.

It started off promising, with bundles of enthusiasm from me. I got to play, being ‘teacher’ at ‘Mummy school’ and I secretly loved it! But by Wednesday of the first week (yep, the first week) I was already drowning. Literally, not just by the reams and reams of paper I’d over zealously printed off, but in managing my child’s needs.

I’d done what I’ve done many times in the past and forgotten (or not considered enough) the impact of her visual impairment and other needs on her whilst at home.

After 30-40 mins in the morning she was done. Finished. Not able to do anymore schooling. This didn’t fit into my plan of teaching at least 4 hours. It also meant this tiny window of opportunity to teach had to be masterfully crafted to fit with her baby sister’s nap time.

Said sister is not one to follow my meticulously planned teacher timetable and I found myself running up and down trying to help them both at the same time. So, I needed reinforcement and thus the substitute ‘teacher’ Miss TV was brought in.

Curated TV shows were picked in an attempt to allay my guilt at not being as present as I wanted. But, just as a ‘solution’ was found, more challenges arose.

TV was adding to her fatigue. The iPad was the same. Screen time, although a great tool, was making her eyes more tired.

By the afternoon she was over stimulated. Her sensory issues seeming to grow each day. Chewing her clothes, shoes, hairbands indiscriminately. Her temperament was also changing across the day, getting more and more irritable.

I tried introducing playtime in the garden on lovely days, but very quickly she would ask to go indoors or stay outside whilst hovering in the available shadows.

I had to evaluate what I was doing and how I could change them to better fit for her.

My ‘ah ha!‘ homeschooling moments

  • Work around her. If she’s up for some activities run with it. If she doesn’t want to do P.E with Joe Wicks at 9 in the morning, it’s fine. Let her chill out!
  • Keep things simple. I was going wrong trying to emulate school. First of all, I’m not a teacher. I don’t have the patience or the enthusiasm at 9 in the morning to bring the energy or creativity needed each day. If I was showered before 9 I was winning!

Instead of trying to do everything each day, just pick one thing and chunk it.

10 mins playing with the abacus (yes she prefers tactile visual 3d objects when learning maths). 10 mins on the computer later on. Mix it in with play with her and her sister and bingo you have 30/40 mins of maths done.

  • Use your child’s interests. My daughter loves pretending to be a superhero and so ‘Mummy School’ used this as a motivator. We typed (font 24) together on the computer, to write lyrics to a superhero song.
  • We made up a superhero story using key words.
  • I sent her on missions around the house finding key objects, getting her to use her vision more specifically.
  • We played target ‘shooting’ number games in the garden.
  • We treasure hunted with key phonics sounds and she loved it.

It’s ok to move away from academic learning. Let go of the guilt!

My daughter clearly needs reassurance in these times. On a trip out to the park a passerby prompted a scared exclamation from her that she was ‘scared of people’. Being inside and kept away from friends and family was having an impact on her I hadn’t imagined. Indoors she’d seemed fine and at ease with our explanation about COVID-19, but how this manifested in a small child’s mind was, in fact, worry. So a deliberate decision as a family was made for daily trips out. Less emphasis placed on following the curriculum but more on her wellbeing.

  • Less is more

TV is great but it needed to be limited and thus Miss TV could only come to ‘teach’ after lunch. Having the morning free of screen time gave her space to feel … bored. And though this can be incredibly annoying for us parents (as we are normally the boredom ‘slayers’) what has transpired for us was a growth in her independent play.

  • Their eyes get tired. We know this, but I know I do forget in the whirlwind that is life. Being home during lockdown, I’ve seen more often my daughter’s wobble get more and more pronounced as the day goes on. She has always had a mild head turn but it has definitely accentuated in these times. She needs time to rest.
  • Stop helping so much

One thing I’ve learnt is that in my effort to support my daughter I also facilitate things too much for her, so she has grown used to always asking for help instead of trying to overcome the challenge herself.

Perseverance is a skill and very much linked to confidence. Being comfortable with getting things wrong is also very much part of our children’s journey.

As a parent of a child with needs, I always wanted to mitigate her feeling of helplessness. I wanted her to always feel she can ‘do it’ even if she needs help.

By sometimes putting in help prematurely, I’ve limited her chances in developing resilience and self confidence.

This lockdown has shown me that this is a key thing she needed to learn alongside her academic attainment.

Please don’t misunderstand me. Always have things in place that allow your child the best possible chance to access their work comfortably. But, separately, also encourage their own desire to work things out on their own.

The lockdown isn’t over and, while easing might be slowly coming in, we’re still far away from normality. This time has been revealing and a time I’m thankful for. There’s still enough time for further revelations but I will leave that for another post!

Key considerations during lockdown:

Keep a diary of any changes or concerns regarding your child’s eyesight. Although hospital appointments might not be happening as regularly, still speak to an ophthalmologist if you have any concerns that you feel can’t wait. Also keep in touch with your child’s QTVI who can provide help and support with homeschooling during this time.

Nadine is the author of ‘Can I Tell You About Nystagmus?’

A friendly guide, featuring a girl called Amber who explains all about her ‘dancing eyes,’ or nystagmus. Amber explains how children with nystagmus might need to read, learn or play differently, and what their families, school and friends can do to help.

Purchased your copy of Nadine’s book from our online shop.

Neil sits on a bench.

Nystagmus in lockdown

In this Guest Post, Neil writes about his experiences of lockdown as a visually impaired person.

I’m registered partially sighted and diagnosed with nystagmus and ocular albinism from birth. Both conditions will never improve, but fortunately will never get worse either, so I’m told.

Basically, I’m extremely short sighted and on a good day (with the correct lighting) I can clearly recognise a person’s facial features and movements from about two feet away. Any further and people just become a blurry shape. I also have very limited depth perception so cannot see stairs, pavement edges or judge distances.

When the pandemic started in early March, I began to feel more anxious about catching the virus myself and passing it to my fiancee, who had just come out of hospital. At this stage I wasn’t really thinking about how it would affect me from my disability standpoint.

Each day I was travelling on the train to work. I was getting more and more worried about taking the virus home with me. On 18 March it was announced that schools would be closing and all staff would be working from home. That announcement was such a huge relief for me; my fiancee was still recovering and the thought of her or the kids catching this virus terrified me.

A few days later I was called by work and advised that we would each be working a day in school on a rota basis, as our school would be providing childcare provision for key workers.

I can’t describe the sheer panic that I felt during that phone call. By this time, we had isolated ourselves as a family and were happy to live that way for the foreseeable future, risk free. Now I was faced with the prospect of venturing out of the house. This is the first time I can recall thinking about how I was going to cope without being able to see other people clearly.

The first journey was nerve racking, to say the least. However, when the bus pulled in, I did feel a small sense of accomplishment. The train journey home was helped by the fact that I was the only person travelling in a carriage, so my anxiety about being close to others didn’t really come into play.

As the weeks have gone by my anxiety levels have diminished. I certainly feel a little braver when I leave the house for work each time. But those anxieties never really leave you.

The next big issue for me was leaving the house for shopping. The first few weeks of lockdown, our daughter was happy enough to pop to the local shop at quiet times for the essentials. We knew this would have to change as we were slowly eating our way through the supplies in our chest freezer. This is when my second major pang of anxiety kicked in. How can I maintain a social distance from others when I can’t see them clearly and have no idea how close they are to me?

My fiancee and daughter went shopping a few times to quieter supermarkets, but I felt more and more guilty that I wasn’t able to assist with this. So I made the stubborn decision. I was going to brave a walk across the road to the shop on my own.

My fiancee is so supportive of me and knows that when I’ve got my “I’m doing this for my own self confidence!” head on, its best to leave me to it. So I arrived at the front of the store, disabled lanyard on, white symbol cane in my hand. I could make out a massive queue of people stretching around the corner and had no idea of where to go / what to do. The staff there are extremely helpful, but even so I came close to a few people and was told in no uncertain terms I was too close and what was I thinking of. It was a nerve-racking experience.

I’ve always relied on being able to pick items up, check labels to ensure I’m buying the right thing. This was now not allowed. I opted for the easy way out that day and picked up a few things I already knew the locations of. Thank goodness they didn’t change the layout that day.

When I got to the till I started to panic again. What do I do? Where do I stand? Then I heard a familiar voice call my name. It was someone I knew. I was saved! Since that day I’ve been shopping with the family on numerous occasions, but I always feel more of a hindrance than a help, because I can’t social distance. I’ve raised many an angry eyebrow by nearly bumping into people in shop doorways and aisles.

COVID-19 has presented us all with so many life-changing challenges and experiences and I hope I’ve been able to give you a small insight (no pun intended) into what it’s like for a person with a visual impairment.

I would encourage everyone to share their experiences during this pandemic, because by sharing we are hopefully helping others to understand and make life that little bit easier for people who have found themselves less able to be self-reliant over the past few months.

Stay safe everyone!