Need a handy guide to how the eye works and what all the parts are called? This great guide from our friends at Fight for Sight will help you understand more the next time you visit the eye clinic.
How amazing is Rocco?
Rocco is 6 years old. He has Ocular Albinism and nystagmus, he also has other disabilities, but, for the first time in his life, his parents have got a report saying he was age appropriate at reading. They are totally thrilled because they never thought he’d read.
Well done, Rocco!
A unique way to raise awareness
Vicky is a nystagmus Mum who came up with a really different way to raise awareness of nystagmus in the run up to Nystagmus Awareness Day on 20 June.
She tells us:
“Here are some rocks I’ve painted as part of the “Rocks of Swindon” project about hiding and finding rocks around Swindon. I thought this would be a great way to raise awareness of Nystagmus. My 4 year old son was born with Nystagmus in one eye. Not a lot of people know what it is or have ever heard of it so hopefully this will help spread the word!”
It certainly will help raise awareness. What a brilliant idea!
How amazing is Mehak?
Growing up with nystagmus and albinism, I hated school and social interaction. I was always self-conscious and easily embarrassed that my weak eyesight, poor balance and hypersensitivity to sunlight made me rubbish at activities like sports and hiking. I was, however, always good at academics and especially loved reading. In my early years at school, I enjoyed stories so much that I was usually a reading level ahead of my class. Writing, on the other hand, was much more difficult. My mother recounts how slowly and painstakingly I learned to form each letter and number, giving both her and my teachers a hard time throughout the journey. Then, in about the second or third grade, we began learning how to use computers and I promptly fell in love with technology. I loved typing instead of writing even though it was – and still is – difficult to read the small font on a computer (and now smart phone) screen. I was embarrassed to have to lean close to the screen, but I was also having too much fun to be deterred. As the years passed, I kept getting better at writing and using computers despite my weak eyesight. At college, I finally learned HTML and that led me to start a simple blog and customise it just the way I liked. I went on to pursue a master’s degree in Communication and topped the class. Today, I am a writer and online content creator, leveraging technology to do what I love, despite the challenges. Facing screens all day is often so tiring because my eyes strain easily and I don’t have the best posture while working (in order to see better). But I love what I do and I enjoy learning new technologies all the time. I am currently teaching myself web design and working on setting up my own website. I have been blogging informally for years but have decided to get more professional with it now. I am also working on my first novel and hope to finish it soon. I feel that having nystagmus and albinism has made me a much stronger, resilient and empathetic person. I still get self-conscious and afraid to interact with others, but I am also much more confident than I ever dreamed I could be. I appreciate the fact that every single person faces challenges, but we just have to keep going and work out a way to do whatever it is that we really want to!
How amazing is Rylan?
Rylan’s Mum says:
“My son Rylan was only diagnosed with nystagmus in Reception at school, although I had always noticed his eyes swinging from side to side.
He is just turned six and is the first free reader in his class! We are so proud as we know scanning the words isn’t easy for him and he gets very tired after a while.
He is amazing though!”
We think so, too! Well done, Rylan!
Guest post from Marcus at Tate Britain
This is a message from Marcus at Tate in which I tell you about our forthcoming Audio Description events at Tate Britain, this month and next.
Tate Britain, Monday 18th June 2018 at 10.30 am for refreshments and 11.00 am – 12.15 pm tour.
Aftermath: Art in the Wake of World War One
Join Marcus and Sara for a description and discussion of paintings from the new Tate Britain exhibition, Aftermath. We have chosen paintings that show the effects of warfare on young soldiers and how countries such as Germany and Britain tried to recover and re-present themselves in the 1920’s.
Free, no booking required. Please meet in the Manton Studio from 10.30 for refreshments.
Chairs and hearing support equipment will be provided.
Tate Britain, Monday 16th July 2018 at 10.30am for refreshments and 11.00am – 12.15pm tour.
Fire and Ice: comparing two masterpieces by Turner and Constable
Join Tate’s audio describers for a description of two great masterpieces of 1830: John Constable’s Salisbury Cathedral from the Meadows, and JMW Turner’s Caligula’s Palace. This is the first time that these two paintings have hung alongside each other since they were first ever displayed at the Royal Academy in 1830.
Tate’s Framing department has just reframed the Constable painting and they have given us a sample of the exact frame and materials they used. Marcus will facilitate handling of these objects in order to give an understanding of how Tate has authentically recreated a frame from the 1830’s, the exact date period of this painting.
Free, no booking required. Please meet in the Manton Studio from 10.30 for refreshments.
Chairs and hearing support equipment will be provided.
Have a great month and we hope to see you at one of our regular Audio Description events which always occur on the third Monday of each month at 11.00 am at Tate Britain.
Marsha De Cordova MP on nystagmus
We are delighted to be able to welcome Marsha De Cordova MP, Shadow Minister for Disabilities, as our keynote speaker at this year’s Open Day in September.
As a sneak preview, follow this link to hear Marsha talk about her nystagmus and how she must adapt her ministerial work to accommodate her visual impairment.
How amazing is Suzanne?
I wanted to share my story to show people with nystagmus that it doesn’t have to stop you from fulfilling your dreams.
I was born with nystagmus and my parents were told I would need lots of help and wouldn’t manage mainstream school. Well I did manage it, and also managed college, university, and thereafter a masters degree in Stockholm in Sweden. My chosen direction of study was light and health, and lighting in architectural design.
I have always loved the visual arts (ironically), but lighting was most important to me because of my nystagmus. I wanted to understand how lighting contributes to aiding or in some cases impeding the visual experiences a person has, particularly with nystagmus. The lighting we apply to a space, be it a church, an airport, a restaurant or hotel, or even a street lit at night, plays a significant part in our experience of that environment. Not just in terms of atmosphere, but also in relation to way finding, and whether we feel safe and comfortable in that environment.
I completed my masters degree ten years ago, and have since built up my career in architectural lighting. It has also suited my addiction to travel as I have visited many countries to study the local architecture as well as work related travel for various projects I’ve been involved with.
Being originally from Aberdeen, I began my first job as a lighting designer in Edinburgh. My itchy feet shortly got the better of me though, and I was soon enough back in Stockholm to take up a new position in lighting there. I am currently living in Hamburg in Germany, and have very recently started up my own lighting design company, through which I hope to raise further awareness of lighting and its importance for a more inclusive environment. Not just in Germany, but internationally…..wherever my work takes me really!
How amazing is Alfie?
My son Alfie who is almost 10 has never let anything stand in his way despite now being blind in one eye and having Nystagmus. Alfie persevered in learning how to ride his bike last year and got one for his 9th Birthday. He is going to be sitting the 11+ this September because he is determined to get a place at Grammar School. He has just been on his third skiing holiday and was told by his instructor that he should start training to become a Paralympian!
How amazing is Hannah?
When I first started school I really struggled to read. It took me months and months to read the first Harry Potter book for myself in large print. I got lots of help at school, though, and especially at university. Now I’ve got a degree in philosophy.