Going to uni with nystagmus

Today’s guest post comes from Ella, author of the blog, Life of Ella. Ella is a First Class Honours graduate and a civil servant. She also happens to have nystagmus.

Some people with nystagmus might think that university is not for them, but Ella is here to share her experiences of support and success.

I recently graduated (class of 2018) from Nottingham Trent University with a first-class honours in Health & Social Care. I have a mild form of Cerebral Palsy and I’m visually impaired (I have Nystagmus and Astigmatism).

Before

I went through the same process as everyone else as applying for a place at university – writing my personal statement and submitting my UCAS application, deciding on my potential choices and working for the grades I needed.

When it came to choosing my five choices, (in the end I had four) I had to first decide the furthest away I wanted to look from home, and how easy it was to travel there and back home on my own. Reasons for this being I can’t legally drive so I rely a lot on public transport (mainly trains) to get me from A to B.

My four choices in the end were:

Nottingham Trent (NTU)
De Montfort (DMU)
Bradford
Manchester (I never actually looked round in the end…)

It was actually quite difficult to choose my first and insurance choices – for a long time, my top three choices were all being re-ordered, all for different reasons…the course, location, the campus, even the lecturers at the open day. Eventually, I settled on the list above, and I am so happy I went with NTU as my first choice, but more on that later.

After having my place confirmed at NTU I was then able to apply for my tuition and maintenance loans from Student Finance England (SFE), and apply for the Disabled Students’ Allowance (DSA) alongside … let me tell you, this was not a smooth ride, and I encountered my first major hiccup.

I was told about the DSA when I looked around DMU for the first time, with my parents. We visited the Student Support department to see what support they had to offer, and I briefly explained my situation and my needs. I never knew it existed until that moment, so I looked into applying for it at the earliest opportunity.

Take a look at this post by Chloe which explains the DSA in more detail and type of support you can get from it. I will also try and cover the help I got too.

My DSA process – from start to finish

After filling out the form for both SFE and DSA, they were both accepted. I was invited to arrange a Needs Assesment to determine what support I would need to help with my studies.

The assessment was pretty informal, a long chat so the assessor could find out more about my conditions (using non-medical jargon!) and chatting more about what could help with my studies.

The following recommendations were put into the final report and put forward to help me with my studies:

A scanner and printer – this would allow me to print out all the materials I would need (particularly useful for doing my dissertation and printing out/analysing papers)
Read and Write (text to speech software) – for me, the most useful piece of software and I wish I had known about it earlier. I mainly used this for when I was writing my assignments, as it would read aloud to me as I was typing so I could notice if there were any mistakes, which was extremely useful. There was also a feature for when I was researching for assignments to use different coloured highlighters. Read and Write would then store them all in one place, I could make each colour for particular subjects/ideas, and wouldn’t have to go back to find them each time.
Dragon Naturally Speaking (speech to text software) – This bit of kit is amazing. Think Siri but smarter. You train Dragon to recognise how you speak and get used to your accent (coming from Yorkshire I was sceptical it would understand me…) but it came in handy when doing my work but I was feeling tired or didn’t have the energy to write out thousands of words in a short space of time.
MindView – this is a mind mapping software. It allowed me to create mindmaps on my laptop for assignment outlines. I was able to easily access them, and they were easier to read than paper versions.
Audio recorder and software – mainly used for recording lectures so I could focus on the key points, but have all of it to listen back to if I needed to.

As well as these, I was given an ergonomic chair (to help with my posture and my pain if sat down for long periods – normal office chairs are super uncomfortable. The chair was made-to-measure)footrest, a laptop stand, and an external monitor.

We initially thought the laptop I had at the time would be suitable to run all this new software on – but when the suppliers came to fit it all, they ran into a problem. My laptop wasn’t powerful enough to run some of the software I needed. Luckily, DSA meant that they offered laptops to those who needed them. The catch – they had just updated the rules, meaning everyone now had to pay £200 if you wanted a laptop from them. That aside, I had everything I needed to help me when studying.

I was able to keep everything I was given, so my chair and footrest now live at work.

Next, I was able to apply for my student accommodation. My parents spoke at length with Student Support and Accommodations services at NTU to assess my options. I was always going to stay on campus, as that way I was able to access everything I needed, have my own space and the staff were able to help if I needed it. I Was able to go back and visit the accommodation a few times and I even got to pick my specific room.

Months went by and results day had passed. I kept checking my SFE online account to see that everything was in order. However, my tuition and maintenance loan application still said: “Awaiting confirmation” or something to that effect. Long story short, when I finally got to speak to a senior member of staff, it turns out my DSA application had somehow overwritten my other application. The whole process was a very stressful and inaccessible one, meaning I was considering dropping out of university before I had even got there, but they managed to sort it all out in the end.

During

I was able to move into my halls of residence a few days before others. This gave me a chance to settle in and get used to my surroundings before it was full of my flatmates.

Freshers Week wasn’t the nicest experience. I don’t drink and haven’t really been around many people who have drunk a lot. The nights were very loud and I felt very anxious. I mainly just hibernated in my room watching Netflix or YouTube, trying to drown out the loud music. I know that isn’t what you’re supposed to do but it just wasn’t my thing, but that is what Freshers is geared towards.

Throughout my time at university, I had an Access Statement which detailed my disabilities and what help I needed. This was given to my personal tutor(s) and lectures to help them understand what I needed and be aware of my situation. The statement also allowed me to gain deadline extensions (if I needed them) on assignments.

I was mostly able to access the lecture and seminar PowerPoint slides to read beforehand on my iPad and laptop and during the lecture.

If I was meeting new tutors, I took it upon myself to introduce myself to them and make them aware of my situation, regardless of them seeing my access statement. Most were extremely helpful and made my experience more positive.

My DSA allowed me to also have a non-medical support mentor. She would help me with planning my assignments and helping me with accessing materials and the best way to organise my work and proofreading. I found this extremely useful and would definitely recommend it.

During my three years at NTU, I stayed in halls of residence. This was for my own safety and ease of access. Student houses are often old and inaccessible, so that wasn’t an option for me. My friend and I decided we would stay in halls of residence together, we were able to stay in the same flat and still be on campus. I enjoyed living on campus throughout my time at university.

After

So…you might be wondering, what am I doing now?

I have a job working as an Administrative Assistant for a Civil Service department in Leeds. I have been in employment since November 2018. At the moment I am working part-time, as I was unsure of how I would cope with full-time work.

Reed in Partnership: Better Working Futures programme helped me in gaining employment. They not only helped me find a job but helped me massively with interview techniques and gaining confidence.

I really hope this post has been useful. If you are at university or in employment with a disability, what advice would you give to others?

Ella x

You can follow Ella’s blog, Life of Ella, here.

The Market-ness of the Market Place – building concepts through everyday experiences

A guest post by Gwyn McCormack, Director of Positive Eye: delivering training, courses and a unique product range to support the educational needs of children and young people with vision impairment

Gwyn will deliver a ‘Supporting literacy and learning at home using everyday experiences’ workshop at our Open Day on 28 September.

Sighted children develop a huge amount of knowledge and experience through incidental learning. During the first few years of life they have exposure to a vast range of visual symbols that convey meaning. This access to the literate environment doesn’t occur naturally for the child with visual impairment. Our goal is to expose the child with vision impairment to a rich variety of concrete experiences, involving as many objects, people, places and activities as possible. This should be done systematically, as early as possible and as often as possible.

Building this solid foundation of reading readiness skills and fun experiences from infancy is critical. Using a theme-based approach during the emergent stages of literacy development enables us to offer a multitude of rich, meaningful literacy learning opportunities linked to everyday situations, as well as ensuring we maximise the literacy opportunities from within fictional books.

We are surrounded by a vast array of learning opportunities which can be used to support the learning development of children with vision impairment. These start in the home, in the kitchen, in the bathroom, in the garden and beyond. A holistic approach harnessing the child’s everyday environment, embraced by professionals and parents offers the opportunity for exciting, creative and fun ways to develop the child’s skills. These skills– all crucial to the child’s emerging literacy pathway include: auditory and language skills, concept development, tactile and fine motor skills, book and story skills.

Key to concept development is that you ‘maximise and ‘reinforce’ each learning opportunity as much as possible in as many ways as possible. This is crucial. You are teaching the child about objects, their characteristics and qualities, how they are made, where they are stored and what their purpose is in different contexts. The child needs to feel, smell, taste (if appropriate) and look at objects and develop appropriate and meaningful language to support their understanding.

I call this understanding the ‘ness’ of the object/activity.

A popular Positive Eye concept building activity to demonstrate this is the ‘woodenness of wooden spoons’. Gather a collection of wooden spoons (different lengths and types); explore how they are made, where they are kept, what they are used for and where they can be bought from. Investigate the sounds that can be made, explore the textures and feel of each spoon and taste food from them. In doing this we are looking at developing a clear understanding of ‘Process, Form, Shape and Purpose’.

Experience and maximise the learning opportunities by organising spoons from the shortest to longest, thinnest to widest, or smallest head to biggest; or measure using each spoon as a unit of measurement. Visit your local store and buy a wooden spoon, wash it, feel it when it is wet, dry it, put it in the drawer. Make beans on toast, feel how many beans fit on the spoon, try eating the beans from the spoon, does the spoon fit in your mouth? If not, whose mouth does it fit in?

Then, building on this approach, collect a Basket of Everyday Objects, (cups, jugs, brushes, spoons, socks, sponges, boxes) and develop and progress to include greater concept development, tactile discrimination and fine motor skills. Use different textures, make sounds, play and extend the learning – rattle the spoon in the cup, fill the cup and the jug with water and find out which holds the most, squeeze water from the sponges, match the socks or categorise the brushes, such as toothbrushes and paintbrushes.

These approaches form the way in which Story Buckets work. They offer a fun, creative way of cueing the child into enjoying a meaningful literacy experience linked to either a story or everyday learning opportunity or both. A practical example of this approach is Positive Eye’s well loved story ‘Marvin’s Market Adventure and Grandma’s Special Birthday Picnic’. This is a story about Marvin who was a kind a little boy. He loved to visit his Grandma and help her to look after her beautiful garden. One day he decided he would surprise her as it was her birthday and he want to make her a special picnic. He wrote his list of all the things he would need for the picnic and set off to the market to make his purchases. He would buy a beautiful flower for her garden and a little shiny fish for her pond…..little did he know that he was in for a surprise when he arrived at the market!

The story demonstrates how to support and develop a theme based approach using a fictional story, based on the rich learning opportunities within the everyday experience of the market place. It embraces the ‘marketness’ of the market place.

Using an appropriately sized bucket with a bucket apron fitted around it provides a convenient portable carrier and a place from which to bring the story to life. The pockets of the apron create exciting storage spaces to place the objects for the child to find, whilst larger objects can fit into the bucket itself. Blank credit cards with large print/audio labels/Braille labels are attached with Velcro to each pocket to encourage the child to read/listen to the label, letter/word.

Here is a list of some of the things gathered for the story bucket:
Bucket, bucket apron, Marvin (boy doll), sunflower with tatty leaves, 2D cut out silver fish, vegetables and fruit. Piggy Bank, purse, shopping list, shopping bag, real or plastic flowers. Bread rolls, gingerbread men, cake, lots of little and big shiny fish cut out in card, picnic cloth, bottle of lemonade, big and little plastic boxes for big and little fish, real vegetables and fruit. Red hat and apron, flat cap and apron, fisherman’s hat and wellington boots, baker’s apron and hat, paper bags, birthday candles.
As the story is told the child is cued into the critical features of the objects as they are introduced. With encouragement and support they can locate, explore, feel, press, touch, lift, hold, grasp, look, smell and taste (as appropriate). Talk to the child and use meaningful language to describe and explain purpose, shape, form and process as the story unfolds.
Here are some examples of the wonderful learning opportunities that lie within Marvin’s story. There are many more besides.

Main story

Read the story and give the child the real objects to hold whilst they listen
provide labels for all the items and have the child match the Braille/print label to the item
Dress up and role play the story
Make a simple model of a market stall
Make a book of main characters and key words
Make a shopping list; handwrite, type, record using audio labeller
Count money into wallet, sort coinage

Flora Flower’s Stall
Plant flowers and vegetables – measure growth
Feel the parts of the flower, petals, stalk, leaves
Talk about how flowers are used to signify different occasions: birthdays, weddings, saying thank you

Veg Man Vernon’s Fruit and Vegetable Stall
Buy and explore real fruits and vegetables, count, sort, categorise, discriminate, smell, taste, cut, cook, eat,
Make vegetable prints, add sand to paint to create texture
Explore a vegetable patch, grow own vegetables

Fishman Phil’s Stall
Visit a fishmonger, buy a fish, feel and explore, smell, cook and eat!
Talk about where fish live, pond, seas, rivers, lakes

Grandma’s picnic
Make/buy/decorate a birthday cake
Make gingerbread people: count, buy ingredients, make, bake and eat
Lay table for picnic, count how many plates, glasses, spoons are required

To sum up, literacy opportunities are all around the child waiting to be explored and experienced. Remember to add ‘ness’ onto everything you talk about, the ‘bucketness’ of buckets, the ‘fishness’ of fish, the ‘cakeness’ of cakes and more! Keep it concrete and purposeful with learning maximised to the full, but most of all keep it fun!

About Positive Eye

Gwyn McCormack founded Positive Eye in 2008, her mission being to provide practical courses, consultancy and a bespoke product range of resources for practitioners working with children and young people with vision impairment (VI). Positive Eye has developed a business that is highly respected and which works nationally in the UK and internationally. Gwyn has presented training in over 10 countries including Iceland, Belgium, France, Germany, Sweden, Romania and now more recently in the USA where there is a new developing interest in her work with 3 visits already under her belt and a 12 day training tour of Kentucky and South Carolina ahead. This is in addition to the great honour of being asked to present a pre-conference workshop at the Getting in touch with Literacy Conference in Seattle in November.

Gwyn uses her many years of experience as a Qualified Teacher of VI (QTVI) and Head of Service to deliver imaginative and creative approaches, within easy to use frameworks, equipping the front line practitioner with the practical skills they require to support children and schools. Her work has included taking the lead role in delivering the two year QTVI course at the University of South Wales, contributing to the University of Birmingham QTVI course, participating in European projects; the most recent on developing educational resources for professionals working with children with CVI. At the moment she is working with the Welsh government and has developed an exciting new approach; Step-back, a whole school/setting approach to promote independent learners to support Wales implement their new Additional Learning Needs Act.

Please do get in touch if the courses, resources and approaches developed by Positive Eye are of interest to your work.

www.positiveeye.co.uk

Email: [email protected]

Phone: 07947571559

Facebook: https://www.facebook.com/PositiveEye/

Twitter: @PositiveEyeLtd

Instagram: @pos_eye

Nystagmus and driving by Sophie

Please download our guide to Nystagmus and Driving here

This guest post is from blogger, Sophie who shares her experience of living, laughing and loving with nystagmus in her blog ‘Nystagmus in a Nut Shell’.

Nystagmus and Driving – what’s the real deal?

Well, I’ve had experience in this matter, so let me share it with you…

Can people with Nystagmus drive? Without a doubt, that’s one of the most common questions for parents of or any person with nystagmus to have…

In my previous blog post “5 things to NEVER say to someone with Nystagmus” I mentioned that a lot of people with the condition can’t drive, which is true. HOWEVER, and this is a BIG however, it all depends on each individual case.

If any of you attended the Nystagmus Network’s open day in Birmingham a few years ago, you may have witnessed my appalling presentation where I rambled on aimlessly about my life, including being able to drive. Well, for starters, my nerves were level 500000, and when I’m nervous I babble on with no filter. Please let me set the story straight and explain from the beginning:

Here’s my experience of driving with nystagmus

(Sorry – it’s a long one!)

I’ve always had it drummed into me from a young age that I’d never be able to drive, and I didn’t really have a choice but to accept that. When I went to uni (three weeks after my 18th birthday) the only form of ID I owned was my passport and of course, giving the infamous university culture, I was ‘out out’ every night. After a while I was growing tired of all the near-misses of losing my most valuable form of documentation.

It must have been during my first semester of my second year when I went for a check-up at Moorfields Eye Hospital, when the optician asked me if I was driving yet. Of course, my immediate reaction was to give her the dirtiest of looks because surely, she of all people should know that people with Nystagmus can’t drive. However, she assured me this wasn’t the case and that I meet all the driving requirements.

Absolutely flabbergasted, I went online and applied for my provisional driver’s license as soon as I got home. My little brother had applied for his a few weeks before me and he received it in the post after ten or so days, so I thought that it’d be the same experience for me – WRONG.

When filling in the online form, you must declare whether you have any medical conditions etc. Not going to lie, I was tempted to put no, because Moorfields had said I was okay to drive, and they’re the best eye hospital in the world so they know their stuff, right? Luckily my mum (who was also shocked that I’d been given the all clear) said that I needed to declare it for insurance purposes; like if I had an accident I may not be able to claim make a claim if I hadn’t declared my eyesight problem and it came out that I have Nystagmus.

A few week or so later, the DVLA got in contact with me saying that they need more information about my eyesight before they could process my application further, which is fair enough. I can’t recall exactly what I said to them (we’re talking over five years ago now – I’m getting old), but they eventually got back to me and said they had rejected my application. Of course, me being the stubborn lass that I am, wouldn’t take no for an answer, so I asked Moorfields to compile a letter for me explaining exactly what they told me.

Fast forward to what must have been two month or so later and I final got another letter from the DVLA, saying that they were going to have to conduct some tests on me to confirm that it was okay for me to sit behind the wheel. For the first test, I had to go to my local Specsavers to have a sight and peripheral vision test. The sight test was pretty much basic – reading numbers descending in size off a chart (something I’ve had to do at least once a year since I was too young to remember). The peripheral one on the other-hand, I’d never had done before; it consisted of positioning my head in this white fish bowl-type container, keeping my head still, staring straight ahead and clicking every time I saw a a light pop up. The guy who was monitoring my responses gave me about five or six attempts to pass the test because he was fascinated by my eyes and how there was no reoccurring pattern to which ones I’d miss because of my eye movement. Normally, he said, people would either miss the lights appearing to the right or left, or up above, but there was no correlation with me. I think I finally managed to pass on the sixth attempt, however when the guy did say that he would never want to be in a car with me. The cheek.

A few months later I received another letter from the DVLA saying that the final stage was to go and do the classic number plate reading test. Leading up to it, my mum and I were measuring out the distance (around 67 feet) and getting me to practice reading the plates, which I was just about doing. So when the day came for my official number plate test, I felt semi confident. My boyfriend, who had just passed his test at the time, took me to my local test centre where, this is no word of a lie, I spent 45 minutes trying to make out the letters/numbers on the designated plate. FORTY FIVE MINUTES. But I still passed, and I received my provisional license. The whole process probably took over a year.

I honestly thought that getting my provisional would be the hardest part of the driving experience for me – how wrong was I? First, I had lessons in a manual car, and to be honest, I wasn’t progressing as fast as I should have been. 20 lessons and around £600 in, I couldn’t even drive on the main road, we were just driving around my estate or a car park. I was still misjudging the distance between the vehicle and the curb as well as constantly stalling and turning either too early or too late. My instructor suggested that perhaps learning in a manual was giving me too much to focus on, so maybe I was better taking lessons in an automatic.

I had a break for about a year, in the meantime I switched so taking a break from the stress of driving did me the world of good. I then found an automatic instructor around the corner from work, so he collected me at 17:30 every Tuesday. The first time I drove an automatic, I found it so much easier than a manual (as everyone does). It enabled me to focus more on the other aspects of driving, such as if I was going to hit anyone or mount the curb, rather than spending the entire time worrying if I still had the ‘bite’. (some manual term). Without a doubt, I progressed further than I had previously and even drove home from work multiple times (the instructor did have to take over at the roundabouts because I kept freaking out).

I used to date someone who lived a ten-minute drive from the office, so rather than driving back to my village which took around half an hour, we used to go to the industrial estate near his to drive around. I remember once, I thought I was doing well with my turning and my instructor made me pull over. I pulled the car to the side of the curb (with his help because I either got too far up the curb or not close enough), and he asked me how many parked cars I thought I nearly hit. Even though I said none, the correct answer was every single parked car I less than 1 mm away from hitting.

Him saying that was a massive realisation for me – what if those cars had been people? What if those cars were moving and had people in them? I started crying and we called it a day for that lesson.

I resumed the next week, feeling more optimistic, but by the end of the lesson I was in tears again. This happened for at least three more weeks, then my instructor said to me that he personally didn’t feel that I should continue driving, but it was up to me. It was then that I decided he was right and that actually I should have pre-empted this considering how long it took me to pass the DVLA’s tests. The amount of time and money I had spent on lessons, someone could have passed their test at least two times and there I was having a breakdown at a roundabout. In hindsight, it took me that split second longer to focus, but that split second can be the difference between life and death on the road, not just for me but for others too.

I’m not going to lie to you, it was really hard for me to come to terms with the fact that I can’t drive and never will be able to, especially as I went from thinking I couldn’t to being told I’d be able to by Moorfields, which really got my hopes up. It was very bittersweet when my friends, little brother, cousins and stepsister passed their tests. Don’t get me wrong, I’m very happy for them, but it’s a constant reminder that I can’t drive through no fault of my own.

But, does that matter? No, it really doesn’t! I live a 20 min walk from a train station with a direct line into London, a 30 min walk from the local shops, so I’m having to exercise to get a pint of milk rather than jumping in my car, but so what? I’m keeping fit! In fact, 48% of adults in the UK don’t drive!

There are so many benefits of not being able to drive:

Keeping fitness levels up
Helping to save the environment – think about it, your carbon footprint will be smaller because you’re not producing as many emissions
Saving money – no lesson or test fees, insurance, finance, or petrol costs. Paying for public transport is far less in the long-term
You never have to be the designated driver on a night out – for me, this is the most important one!!!!

However, just because this is my experience doesn’t mean that all people with Nystagmus can’t drive. Someone else I know with the same eyesight problem has been driving for years, which continues my point from previous blog posts; Nystagmus effects people in different ways. What may be true for me may not necessarily be the case for you.

What would my advice be for driving with Nystagmus? Give it a shot if you get the option – you don’t know until you try. But if you’ve already been told by your optician that driving isn’t on the table, then it really isn’t a big deal. So many people have said to me “how do you cope not driving?” and to be honest I just look at them and laugh. It’s actually funny how people are so dependent on driving and couldn’t imagine life without their car – how sad is that? If you replaced a car with another materialistic object such as Ray Ban sunglasses, they’re saying how they can’t live without their Ray Bans. Yeah, how silly does that sound. At the end of the day, no car? So what? There are other ways of transportation. If you can drive, then brilliant! Some people can, some people can’t, it’s no big deal and people will think no less of you no matter what. If they do, are they worth having in your life?

So, I’ve shared my experience of driving with Nystagmus with you – what’s yours?

Bye for now,

Sophie xx

For information on nystagmus, driving and the DVLA requirements, please see our free to download booklet ‘Nystagmus and Driving’.

formidAbility

GUEST POST, by Joanne Roughton-Arnold

I am a member of the Nystagmus Network. I have ocular albinism with subsequent congenital nystagmus.

I am a professional opera singer. Inspired by my recent work singing with the British Paraorchestra, I have started a new opera company formidAbility out of a passionate belief that this extraordinary art form can touch so many more people if we better reflect the diversity of our audiences on stage. formidAbility is a healthy mix of disabled and non-disabled artists creating high calibre work, breaking down barriers and challenging perceptions of disability and inclusion in the arts.

We are putting accessibility at the heart of the creative process, giving it artistic value of its own and making it something that enhances the performance for all audiences members. We are all about bringing people together and losing any sense of division between disabled and non-disabled audiences and artists.

We’re thrilled to be bringing our first production to the 2019 Grimeborn Festival at London’s Arcola Theatre, integrating opera with Signdance and the Rationale Method of audio description for the first time.
Tickets are available here.

Please read our full press release below. The rehearsal photo is of me at work with David Bower of Signdance Collective International. David is a fabulous actor who happens to be deaf – he will be well known to fans of the cult film Four Weddings And A Funeral, from his role as David.

Very best wishes,
Joanne Roughton-Arnold

formidAbility presents Hotspur|Pierrot Lunaire

An exciting inclusion in the 2019 Grimeborn Festival, this double bill of Schoenberg’s Pierrot Lunaire and Gillian Whitehead’s Hotspur promises to be a treat for the senses in more ways than one. Pierrot is the wandering, painted-face clown seeking poetic inspiration in a prism of moonlight and yearning for the beautiful Colombine. Expressionistic and darkly comic with hints of cabaret, Schoenberg’s 1912 iconic melodrama for voice and five instrumentalists is one of the most influential musical works of the twentieth century. In this performance, it will follow a new staging of the dramatic Hotspur, the opera that marked the beginning of a prolific collaboration between revered NZ composer Gillian Whitehead and librettist Fleur Adcock. In contrast to Pierrot’s timeless abstraction, Hotspur tells the tale of the 14th century Northumbrian hero, Henry “Hotspur” Percy, through the eyes of his recently widowed wife. Elizabeth Mortimer, labelled “a most dangerous widow”, featured with her husband in Shakespeare’s Richard II and Henry IV Part I. The performance is produced by formidAbility, a newcomer to the British opera scene, who are breaking new ground in accessibility and inclusion for those with disabilities, both onstage and off. Co-founder Joanne Roughton-Arnold, who also sings in both operas, is already known to London audiences from her work with Opera Holland Park, and her one-woman commission for Grimeborn in 2016, Iris Dreaming. Originally from NZ and with a background as a professional violinist, to label Roughton-Arnold as exciting is an understatement. She single-handedly commissions, produces, fundraises and sings projects of astonishing emotion and vision. With a mass of wild copper curls and an arresting belly laugh, her energy is positively atomic. Her own visual impairment has never curbed her own ambitions and vision as an opera singer and producer, and formidAbility formalises her work into an incorporated non-profit company which puts accessibility at the heart of the creative process, rather than adding it as an afterthought, and collaborates with the world’s foremost artists working for or with disability. For Hotspur/ Pierrot, Roughton-Arnold shares the stage with Signdance Collective International artists Isolte Avila and David Bower (perhaps best known for his role in Four Weddings and a Funeral), and also incorporates imaginative live audio description from leading practitioners Rationale Method, pre-concert touch tours and braille translations for the audience. Sara Brodie, one of New Zealand’s leading directors and choreographers, joins forces with London-based Australian conductor, Scott Wilson, to create this ground-breaking new production. The project is being supported using public funding by the National Lottery through Arts Council England, with additional support from the New Zealand Society and the Webb Family Charitable Trust, and has just launched a crowdfunding campaign for the remaining £15,000. Tickets can be booked via this link.

Look on the bright side of being registered blind

GUEST POST: Daniel Williams takes a tongue in cheek look at the benefits of being registered blind.

It isn’t all bad – you won’t have initials after your name, but to be registered severely sight impaired (blind) you don’t need to have complete sight loss but will need to meet certain criteria. So, whilst you may be able to see enough to get around in a reasonably upright manner (except after a visit to the pub), if you pass the test, you’re in! Registering is voluntary, confidential and opens up a raft of prizes.

Blind man’s buff

You won’t get a nice T-shirt to wear – although badges are available – but being registered blind is not a tag that pops up on every screen whenever you want to buy something. It pops up on the right screens at the time you most need to see and be seen.

Registration just means that your name and the details of your visual impairment have been officially recorded by your local social services and then the badge of honour is yours. Things are looking up!

Once social services receive your certificate, they’ll make contact with you to come out and have a coffee and assess your needs.

We are a nation that likes to form an orderly queue … until you come along, jumping up front, flourishing your registration card with glee. Whist you’re unlikely to get invited to tea and scones at Buckingham Palace by the Queen, you can go to Alton Towers and skip all the queues – the same applies to Disneyland and quite a few other attractions. You can usually get a free carer ticket to most theatres, cinemas and attractions and that’s when everyone wants to be a blind person’s best friend!

Just flash the card

There is a need for caution. Best avoid zooming up to the front of the queue for Mr Whippy to get your ’99 first. Large one please! Still, there’s often a kind soul who might see all the slobbering and drooling … from you, I mean, not from your guide dog.

Once you are registered blind, you can settle down to enjoy your favourite TV show, even those gory vet programmes they like to show when you’re eating your dinner, with a half price TV licence. Yes, 50% off the fee!

Stay tuned, there are more goodies to come …

If you are employed, it’s always good to hear that you’ll pay less tax – with your new status as registered blind, you will be eligible for the blind person’s tax allowance.

The price is right

If you want to purchase specialist equipment such as a magnifier, it will be exempt from VAT which is great for avoiding tax once again.

Then there is free bus travel – the downside is that it may only be available after the commuter rush hour at 9.30am, but on the upside, this allows you to get a lie-in so you can stay out late at the pub and blame it on the buses or maybe not, as some bus passes stop working at 11pm.

Or why not get a disabled person’s railcard? As a blind person, don’t give in to the urge to get behind the wheel of a car and motor off onto the roads. But if you have a driver who can drive you around, a Blue Badge will come in useful and you can park in most Pay & Display spaces for free.

You can also get help with certain NHS costs and free eye health checks, which are still important so you can keep a regular check on your eyes without worrying about the price. Here’s the link.

Benefits and grants

Registration will help support a claim for financial support for: Disability Living Allowance (DLA), Personal Independence Payment (PIP), Employment Support Allowance (ESA), Tax credits, Access to Work, Disabled Students’ Allowances (DSA), Attendance Allowance. Click this link to access benefits calculators.

So, what are you waiting for? Simply visit a high street optician or your GP for an initial check-up and referral to an ophthalmologist and remember …always look on the bright side of being registered blind!

Take a look at my sight loss journey video by clicking this link.

All the best, Daniel

Daniel Williams was diagnosed with retinitis pigmentosa at the age of 8 and is now improving the lives of others living with sight loss through his business, Visualise Training and Consultancy. He is our keynote speaker at Open Day 2019 in Cardiff.

Why we’re helping people with albinism to stand strong

A guest post from Roselle Potts, Chair of the Albinism Fellowship on International Albinism Awareness Day 2019.

‘The prejudice and struggles facing people with albinism are sadly as present as ever in 2019…

‘International Albinism Awareness Day is with us again on 13 June and it’s a chance to reflect on the progress that has been made in recent years.

‘As a rare genetic condition that affects people’s eyesight and gives them distinctive pale hair and skin, albinism brings its own specific challenges.

‘Since many people with albinism have nystagmus as one of their visual impairments, I’m sure members of the Nystagmus Network – a charity we work closely with – can fully understand how challenging things can be.

‘Society has rightly moved forward in terms of recognising the rights of people with disabilities in the last few years and there has been greater effort made to acknowledge the special problems experienced by people with albinism from ethnic minority backgrounds, including by the Albinism Fellowship. But more still needs to be done.

‘It is true that our members in the UK and Republic of Ireland don’t suffer the extreme prejudice and live with the risk to their lives that people with albinism in parts of Africa must face, but life can still be a daily struggle.

‘For parents with a newly diagnosed child with albinism it can be difficult to access the correct support from the NHS.

‘Since albinism is such a rare condition – we estimate just 3,000 people live with it in the UK and Ireland – it may not even be diagnosed correctly.

‘If parents do get the right diagnosis, they may still hear urban myths such as “you’ll never be able to take your child on holiday in the sunshine” (simply untrue, but parents need to travel prepared with shades, Factor 50 sun cream and a wide brimmed hat) or “they will never be good at sport.”

‘This is where the Albinism Fellowship comes in. As a positive and sociable volunteer run charity we are the only national charity in the UK and Ireland that exists to support people with albinism and their families. We are planning to launch our new website on 13 June 2019. Here, people can find out how to join the Albinism Fellowship and obtain a useful booklet called ‘Understanding Albinism’.

‘When the child with albinism starts at their local primary school, there may be a lack of availability of magnifiers to help them see textbooks, or no teaching assistants available.

‘While we hear encouraging stories of fantastic teachers and schools supporting kids with albinism, we also still hear disturbing stories of teachers simply not understanding albinism, or being willing to provide extra support.

‘Since this is 2019, this factor is simply not acceptable in a developed country like the UK – imagine the sheer distress the child and his or her parents experience as a result. At our Adult and Family Weekend Conference from 18 to 20 October 2019, we will have expert speakers on education rights and mobility as well as loads of fun activities for children and teens with albinism and their siblings.

‘Adults with albinism experience their own battles throughout their own lives, too. This can be misunderstanding of their condition, prejudice or the lack of access to the same career opportunities that their fully sighted peers would enjoy.

‘We will be hosting bespoke sessions again for adults with albinism including discussion groups during our conference this October. This will be a brilliant weekend with the theme “This is Me!” to encourage all people with albinism to be confident in who they are.

‘The Albinism Fellowship will continue to help people with albinism “still stand strong” – in keeping with the theme of this year’s International Albinism Awareness Day.

On International Albinism Awareness Day, Thursday 13 June 2019, please use social media to show your support to people with albinism around the world. Use the hashtags #IAAD and #IAAD2019 and tag the Albinism Fellowship (@Albinism) and we can share your messages across our networks
In conjunction with International Albinism Awareness Day, the Albinism Fellowship’s summer barbecue and get-together will be in Carshalton, Surrey on Saturday, 15 June, from 11.30am-3pm. The event gives people with albinism and their families the chance to socialise, catch-up with news from the Albinism Fellowship and enjoy some tasty food. This year, the summer event is at a new venue, the Church of the Good Shepherd, a short walk from Carshalton Beeches railway station. People attending should bring their own food for the barbecue. Attendance is free, but please confirm first by email with [email protected].

How amazing is Ursula?

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

Today Ursula shares her own amazing story.

Hi guys! I just wanted to share my story with you as this may give other people with nystagmus, or parents that have children with the condition, hope.

My Mum didn’t understand nystagmus and just thought I had wobbly eyes. The optometrist told her I would grow out of it (hahaha) and I was never checked up on again.

I didn’t understand what it was, and neither did my Mum, so I didn’t get any help through school at all and ended up leaving early because I was bullied (for other things, not my nystagmus).

I have lived a very normal life! It’s important to be correctly diagnosed, but it has also been a blessing because I never felt any different and just got on with my life.

I’ve never been held back doing anything. I went to college and did my GCSEs and A levels (without ANY help from the education system, or any extra exam time) and I am now studying online to become a level 3 personal trainer.

Alongside this, I’ve been a shift manager in a very busy coffee shop (Prêt a Manger) for the last 4 years and I am also a bikini fitness competitor.

Also, today, the hospital told me my vision is good enough to legally drive!!!! WHICH IS AMAZING!

Nystagmus is not a life ruiner. I’m not saying I don’t have any side effects from it. I can get dizzy, struggle to focus and night times are particularly hard for me, but I have just always got on with it, put out positive vibes to the universe and it has always rewarded me.

Never feel alone.

If you’d like to share your amazing nystagmus story, please contact us today. To help the Nystagmus Network support even more people to reach their amazing potential, please consider making a donation. Thank you.

Dan Williams crouches beside his guide dog, Zodiac.

“I’m struggling to see at work”

A guest post from our Open Day 2019 keynote speaker, Daniel Williams, founder of Visualise Training and Consultancy:

Losing eyesight is both challenging and difficult, scary and disconcerting. Having to change the way you do things, adapting to new challenges and learn new skills can be exhausting. Perhaps one of the most difficult aspects of eyesight deterioration is the uncertainty around employment. Sometimes it may be hard to tell somebody at work about your sight loss for fear of losing your job and you may struggle with tasks and suffer from eye strain or headaches because you are trying so hard to cope. Or, you could be afraid to tell your manager in case they think that you can no longer carry out your daily tasks as efficiently as you used to and this may lead to unemployment and all the uncertainty and ambiguity this may bring.

Let’s think about the common symptoms of sight loss, and how experiencing these symptoms may make you feel:

You may find the computer screen difficult to see
You may experience eye fatigue or pain
You may struggle to recognise colleagues
You may be struggling to get around
The lighting may be giving you discomfort
You may be getting tired
You may be finding print difficult to read
You may be getting constant headaches
You may think you are being clumsy
You may not be able to see your keyboard clearly

Experiencing just one of these symptoms may make you feel worried, uncomfortable or anxious. If not checked, in time, these feelings may escalate and cause you to struggle in both your work life and private life. But it is important to understand that help is available and that you don’t have to be totally blind to get help. In fact, the vast majority of visually impaired people in full-time employment have partial or useful vision. Don’t give up your job, just because you’ve lost your vision.

The Equality ACT 2010 protects you against disability discrimination. Your employer has a duty to make reasonable adjustments.

Visualise Training and Consultancy can carry out a work-based assessment to assess your needs and not only give you and your employer ideas on how to make your work life easier, but they will also write a full report, detailing any special equipment or alterations that can be made.

Let’s take a look at the four most common problems that may occur in the workplace for people who are losing or have lost some of their eyesight. Alongside the problem, we’ll look at possible solutions.

“I can’t see my computer screen very well any more…”

This is a common issue that can be tackled in a number of ways. You can use a bigger screen, use an anti-glare filter on your screen or change the colour scheme and text size within Windows. Failing this, a special screen magnifying programme can be used to enlarge what’s on the screen and change the colours and contrast. In some cases, a special piece of screen reading software such as Jaws or NVDA can be used. This will read-out what you type and tell you what is on the screen. Some people may use a mixture of screen reading software and screen magnification software, others may exclusively use screen reading software.

“I’m finding print difficult to read…”

A hand-held magnifier can be used to enlarge print, but technology can also be used. A CCTV/ video magnifier can make reading easier, as can coloured filters and smart phone apps such as KNFB Reader and SeeingAI. Sometimes, scanning a document and reading it on a screen suits some people, as does experimenting with different lighting. In cases where the print is too challenging for technology to tackle, Access To Work may pay for a PA or Support Worker to help you read documents.

“I suffer from headaches and eye strain…”

If you try to exceed the limit of your vision it can be very tiring. Sometimes, headaches and eye fatigue can be environmental, caused by bright, fluorescent overhead lighting or poor task lighting. Often, tweaks to the environment and regular breaks can help prevent discomfort. Also, a good quality, consistent light source can make a lot of difference.

“My sighted colleagues don’t know how to support me in the best way”

Remember your colleagues may not have ever worked with someone with reduced vision. So be loud and proud, tell them what you need and how best to communicate with you. They may also benefit from visual impairment awareness training to understand how best to support employees with sight loss.

“I can no longer drive…”

Losing your driving license because of sight loss is very common and very worrying. However, there are ways to tackle the problem. Discounted rail and bus travel can be acquired with disability passes, making travel to work on public transport cheaper. However, if you have to travel to appointments within your role, or if using public transport is impractical, Access To Work may pay for taxis. This makes life a great deal easier and eliminates some stress.

These problems and more can cause high levels of discomfort, stress and anxiety. It is important to remember that help is available, and that communication is often the key to starting the journey to positivity and a sense of equilibrium. Don’t suffer in silence. The Equality Act 2010 is on your side:

The Equality Act 2010 legally protects people from discrimination in the workplace and in wider society

It replaced previous anti-discrimination laws with a single Act, making the law easier to understand and strengthening protection in some situations. It sets out the different ways in which it’s unlawful to treat someone.”

To book a workplace assessment, please visit Visualise Training and Consultancy.

ANUK conference 2019

Conference 2019

Learn about aniridia and related conditions from each other, and professionals in medical and related fields.

Find out how those affected by aniridia deal with it every day.

Contribute your experiences, ideas or skills to help others.

Expert presentations

Dr Simon Hayhoe from Bath University
Inclusive Technologies for VI people
Dr Ngozi Oluonye from Great Ormond Street Hospital
Developmental and health issues in VI children
Clive Matthews – Special Educational Needs advice
Life with aniridia by: 3 people living with aniridia

Plus

Stalls by organisations for visual impaired people
Annual General Meeting
Crèche
Lunch & refreshments
Social evening

When 1 June 2018 Cost: Adult £21 Child: £8.50

Where BVSC, 138, Digbeth, Birmingham, B5 6DR

Book www.aniridia.org.uk/conference – Deadline 19/5/19

Contact [email protected] 0778 731 8887

Guest post: Audio described tours at Tate

Dear Friends,

This is a message from Marcus at Tate in which I would like to wish you a very happy new year, and to tell you about Tate’s Audio Description tours for Blind and Partially Sighted visitors in January and February.

Our first tour of the year is at Tate Modern, and takes place on Sunday 20^th January 2019. It is a tour and a workshop on German weaver Anni Albers and there are only 14 places available so if you would like to attend please reply via email or telephone me and I will book you a place. The event is led by an artist who investigates how weaving and electrical wiring are related, and together we will weave sonic wire mats which respond to touch. The event is in two parts: an audio description tour led by Dick Thomas in the morning followed by lunch then a workshop in the afternoon. The workshop will be for a mix of sighted and blind people and will be supported with no previous experience necessary at all. Details here.

At Tate Britain on Monday 21^st January 2019 at 11.00am we have a tour of Figure Totem Beast, the sculpture exhibition in the Tate Britain Duveen Halls. As well as describing these sculptures from the 1950s we will be able to touch them using gloves provided. Please meet as usual in the Manton Studio from 10.30 for refreshments. Details here.h

At Tate Britain on Monday 18^th February 2019 at 11.00am we will be describing the totally new Art Now display by Jesse Darling. Jesse works between London and Berlin and creates sculptures which look at the link between art, health, disability, Batman and St Jerome and the Lion. Meeting point is again at the Manton Studio for refreshments before the tour. Details here.

More news about our exciting Millbank Mondays Audio Description tours coming up very soon

Your friend at Tate

Marcus