Category: Guest posts

Technology use in young people with impaired vision

Guest post from Saima Begum, University College London

I am a student at University College London, studying at the Institute of Education and I am emailing to ask for your help with my Masters research project into Vision Impairment.

This project aims to examine technology use in young people with vision impairment, and whether this influences their educational attainment.

There is much research that has found that technology such as screen-readers on phones have been useful for people with vision impairment to be able to function in everyday life, so my project is aiming to look at whether technology use can also have positive effects on education.

Moreover, because of the increasing use of social media, I plan to look at whether technology use can have a positive effect on friendships. This data is important to collect as it will show how young people with VI use technology, and how this could be utilised so they perform better in school.

Participants are invited, between the ages of 11 and 18.

All questionnaires can be completed online, and participants can do this from the comfort of their own homes.

Click or tap here for the questionnaire 

The questionnaire is accessible for screen readers. The first page of the questionnaire also includes an information sheet with more details regarding the project.

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!

The logo of the Albinism Fellowship

Welcome boost for new mums and dads of young children with albinism

Guest post from Roselle Potts, Albinism Fellowship

For more information, please contact Roselle Potts, email: [email protected]

While the birth of a new baby is an occasion to celebrate, parents of children born with albinism often find that support for children with this rare genetic condition is hard to access.

To mark International Albinism Awareness Day* on June 13th, the Albinism Fellowship has stepped in with a new Baby Box scheme. This is available for all families who have a child with albinism who is under one year old and who become paid up members of the charity for the sum of £20 per year. The charity has obtained grant funding for this project and the items in the baby box

From that date, mums and dads will receive an Albinism Fellowship baby box as part of their membership. This contains items to help parents meet the specific needs of their young child; sunglasses, a factor 50 SPF sun protection hat, sun cream samples, a high contrast book and sensory toy as well as the Fellowship’s Understanding Albinism booklet.

Roselle Potts, Chair of the Albinism Fellowship, said: “The arrival of a new baby in the family is a joyful occasion, but when parents find their child has albinism, this can prompt many questions and even concerns. Children with albinism are visually impaired and very sensitive to the sun meaning they need extra care. “

“As the only charity in the UK and Republic of Ireland for people with albinism, we have around 40 years’ experience in helping mums and dads of young children with albinism.”

She added: “The baby box is an exciting new initiative which we are sure will be welcomed by new parents of children with albinism. When we chose which items to include in our ‘baby box’ we looked at the most common queries raised by new parents.

“They often ask us questions about how to protect children from the sun and how to best stimulate their babies’ sight, as children with albinism live with high degrees of visual impairment.”

Rachel Whyte, who received the first baby box for her son ( pictured with his book and glasses) said

“The baby box from the Albinism Fellowship was a gratefully received addition to the support they have already given my family. Having something in my hands meant I could use the helpful advice without having to worry about sourcing the right items. It gave me ideas of the right creams and hats to use and my son loved the easy grip brightly coloured balls. Thank you so much, we love it!”

Notes to editors

  1. For more information about the Albinism Fellowship Baby Box Scheme, or for interview and photo requests, please contact Roselle Potts at the Albinism Fellowship email: [email protected]
  2. For more information about the Albinism Fellowship, which provides help and support to children, their parents and adults with albinism in the UK and Republic of Ireland, please visit: https://www.albinism.org.uk/about-the-fellowship/
  3. About International Albinism Awareness Day*. International Albinism Awareness Day is marked every year on June 13th to celebrate the human rights of people with albinism around the world. It is marked with specific events in various countries, social media activity and campaigns. The United Nations’ General Assembly proclaimed June 13th as this specific day with a resolution it adopted in 2014.
Children reading The Gruffalo.

The impact of COVID-19 on visually impaired children

A guest post from Rosaleen Dempsey, RNIB

Hi there

I am from the children’s services in RNIB. Wonder if you would mind sharing a survey for families about the impact of the COVID-19 crisis on the education and development of children with VI. Survey has been designed by partners in the sight loss sector and is U.K. wide.

Parents’ survey closing this Friday – 15 May

This is the final week to to tell our governments/assemblies across the U.K. about the impact the COVID19 crisis and lockdown is having on the learning & development of your children and young people with VI. Please take a few minutes to fill it in if you can.

Take the survey here

Many thanks,
Rosaleen Dempsey,
RNIB

Julia smiles at the camera.

Julia’s musical adventures

A guest post.

A couple of years ago, I wrote a piece about being a parent with nystagmus of a child without. That child is now old enough to tell me if an approaching bus is a three-and-a-four-and-a-one or a two-and-a-nine, and I consider myself to be winning at life. My second child appears to have decent vision, too. In that article I made mention of my life as an amateur musician. And it turns out there is much to say about being an amateur musician with nystagmus. Some background, then. I’ve got mild nystagmus, bad myopia and astigmatism resulting in vision that’s poorly corrected by glasses or contact lenses. I sing in choirs, play the flute very occasionally in orchestras and took up the violin as an adult.

As a member of a choir, my music-making has tended to take place in churches. For space and facilities, churches are great, for lighting, not so much. As the evenings darken, the torch on my smartphone comes into its own as I struggle to read my music. At least in that I am not alone. The young people are fine, but the, ahem, less young are with me on that, and I thank technological evolution for making my life easier. Rumour has it that music publishing has gone a little bit digital. I’ve yet to see it in use in the real world, but perhaps I’ll benefit one day much, though I am loath to say it, as I have with my electronic reader with its new-fangled enlarged text and lighting options. 

I have problems changing my focal length from page to conductor. The better you know your music, the less you have to look at it. It follows that the harder you work, the less your disability is a problem. Here, again, though, I join forces with my long sight/short sight colleagues.

But for someone with nystagmus, there are those times in choir when the conductor looks at you and says, “Would you have a go at that solo?” In an instant, your heart swells, the adrenalin kicks in, and you’re just about to agree, trying to put a humble spin on it, when the person next to you pipes up and you realise the conductor was looking at her, not you.  

If you have done a solo, the conductor will usually signal for you to take applause for it at the end of the piece. It’s a thrilling feeling when the noise swells in appreciation. But there have been times when, from my flute-playing seat at the back of the orchestra, I have wondered if the conductor was looking at me, dithered and failed to get up. Well, that’s ok. But there has been at least one occasion when the conductor was signalling the clarinet player directly behind me, and I stood up with her — I stole her applause and failed to get my own. 

One of the reasons I play the flute is because you hold it sideways and therefore can get as close to the music as you like. I usually have my music stand higher up and closer to me than “normal”. This works fine for me, but orchestra conductors don’t like it because it ruins the sight-lines and therefore interferes with communication between conductor and player. The classical music world is rife with jokes about conductors and their egos that would sit happily here, but I know a few conductors who will be reading this and I don’t want to ruin my chances of working with them again. I digress. I’ve been asked by a conductor to lower my music stand and felt the tears spring into my eyes, just like when I was at school, as I tried to explain, in front of the whole orchestra, that I couldn’t because then I wouldn’t be able to see the music. I wonder if I’ll ever grow out of that tear-springing feeling.

Another problem in orchestra rehearsals is when the conductor says that we’ll start playing from 15 bars before figure B. Challenge number one: find figure B. Eyes darting across the page — there’s A, there’s C, where on earth is B? Ah, got it (but I thought that was an eight). Challenge two: count back fifteen bars. That’s a rest bar with a number in it. Is it a 1 or is it a 4? (There’s no accounting for the vagaries of type-setting in music publishing.) Right, it’s a 4, count back another eleven bars. Ok, I’m there, I think. Right, so is everyone else. They’re waiting for me. Oh dear. (Thank goodness I’m not a professional, because time is money.) Or they’ve ploughed on regardless and I’m even more lost than I was before. 

The flute section being at the back of the orchestra means the conductor is quite a long way away, far enough for me not to be able to see facial expressions. This certainly has advantages, when those of unfriendly temperament (rare as they are) offer glowering looks at offending players and I carry on, oblivious to their displeasure. Again, winning at life. 

I took up the violin a few years ago, with the hope of one day joining the fiddle section of a bad orchestra. If I ever become good enough, I’ll have to work really hard between rehearsals to learn the music so that I’m not hampered by the music being too far away to see. I’ll have to work harder than my peers, which is annoying, since I am naturally lazy, but I might be a better musician for it.

The better you know your music, the more you look at the conductor. The conductor is there to drive the music, to shape it and to help the performers deliver their best for the audience. The conductor wants to know that the performers are watching; it helps them do their job. I watch the conductor when I can but, because of my null point, perhaps the conductor thinks that I’m looking into the audience at my parents, just off to the right. No conductor has ever mentioned that to me but I wonder if, consciously or unconsciously, any has thought me a worse musician because of it. 

As I have reflected on this topic, I have concluded that I need to work that little bit harder in certain areas than my colleagues in order to achieve the same result. The child of the ‘80s in me says, “never mind, it’s ok, I can manage.” I think this approach is fine in this instance, because what use is a singer who can’t sing the notes? Perhaps I’m seeking acknowledgement for the extra effort. The arts sector tends not to handle disability well, and while I’m grateful that society is more open to conversations in this area than formerly, there is clearly work to be done. 

Click here to read Julia’s story of nystagmus and motherhood

Dan Williams crouches beside his guide dog, Zodiac.

Is it time to review partially sighted or blind certification?

GUEST POST: Founder of Visualise Training and Consultancy and Seeing Beyond the Eyes CET roadshow lead, Daniel Williams has retinitis pigmentosa. In this article, he asks if it is time for a change when it comes to Certification of Vision Impairment (CVI).

Whilst recognition that you have low vision is an advantage, when it becomes a label on a numbered scale, the effectiveness of the certification process is questionable. The other troubling issue is how unfair the system can be by denying patients with VI many crucial benefits and concessions.

To see or not to see…

Certification by an ophthalmologist gives you formal recognition of being vision impaired and opens the door to referrals for social care assessment and many other concessions including financial assistance. You will be registered as sight impaired (partially sighted) or severely sight impaired (blind).

At present, to get the coveted award, known as The Certificate of Vision Impairment (CVI) you need to stumble into one of the following categories:

Sight impaired (partially sighted)

Your sight must fall into one of the following categories, while wearing any glasses or contact lenses that you may need:

  • Visual acuity of 3 / 60 to 6 / 60 with a full field of vision.
  • Visual acuity of up to 6 / 24 with a moderate reduction of field of vision or with a central part of vision that is cloudy or blurry.
  • Visual acuity of 6 / 18 or even better if a large part of your field of vision, for example a whole half of your vision, is missing or a lot of your peripheral vision is missing.

Severely sight impaired (blind)

Your sight must fall into one of the following categories, while wearing any glasses or contact lenses that you may need:

  • Visual acuity of less than 3 / 60 with a full visual field.
  • Visual acuity between 3 / 60 and 6 / 60 with a severe reduction of field of vision, such as tunnel vision.
  • Visual acuity of 6 / 60 or above but with a very reduced field of vision, especially if a lot of sight is missing in the lower part of the field.

…that is the question

This is where things can become tricky for certain eye conditions – you may find yourself stumbling into things on a daily basis, but, unfortunately, not falling into the above categories which still causes immense problems and visual difficulty for the patient.

The criteria, based on the keenness of your central vision – or acuity -judgesthe level of detail you can see, for which you will be asked to read down the eye chart. It also concentrates on your field of vision, which is determined by how much you can see around the edges of your central vision, whilst you look straight ahead.After assessment of the results, your eligibility is decided – win or lose.

Some patients really struggle to see, which adversely impacts their lives yet they will not meet the criteria.

Let’s be clear

A good illustration of this is a patient who has nystagmus. In addition to uncontrolled and repetitive rapid eye movement, they may struggle with sensitivity to various light conditions but have overall good acuity yet still fail to meet the criteria.

Another example of this may be a patient who has early onset retinitis pigmentosa with very good visual acuity and field. They will struggle emotionally with a diagnosis of a degenerative condition, they may struggle in the dark, to cook, clean and get out and about. So why can’t they be certified?

Theseare only two examples. Many people struggle with their vision, at whatever level, but do not get the tick in the right box to receive the support, advice and recognition they need to cope with their loss of sight.As a result, many patients slip through the system and end up alone and vulnerable.

So, has the time come to reorganise and update this system to embrace a more holistic approach to measurement of sight loss, without the charts and numbers focusing on functional vision?

In other words, if someone is struggling to see properly, does it really matter if they meet a set of pre-determined figures?Some eye conditions, even with a relatively high acuity of 50%, leave patients battling to complete everyday tasks. They may also be living in fear of becoming blind or of coping with future degeneration.

The people who are in between who can’t drive and likely can’t read standard sized fonts even with glasses are unlikely to receive any form of disability benefit despite being very much at a visual disadvantage. They fall in no man’s land and are just as likely to need help, especially if they lose their driving licence or job as a result of sight loss.

Sue Ricketts, Executive Information and Development Manager with Nystagmus Network highlights the problem: “So many people with nystagmus fall between two stools; they can’t see well enough to drive, but they can’t get certification on visual acuity alone so can’t access concessionary fares on public transport. If they don’t qualify for Personal Independence Payments, there’s no help there for transport costs, taxi fares etc. either.”

Boxed in      

What is the advantage of fitting people into a box? If you have a problem with your vision, you need to be referred to resources where help, advice and support is freely available.

The challenge appears to be how an individual can be assessed in terms of how their life is impacted by visual problems and how best to ensure limited resources are distributed fairly to give anyone who would benefit, access to the right technology and support.

At present the main focus for certification seems to be Visual Acuity (too often Snellen) which is a very limited tool – great for measuring and in the correction of  refractive error but a poor indicator of useful acuity in the real world. Driving standards recognise that using Snellen acuity is a poor indicator of safe driving vision but they haven’t been able to come up with an alternative. 

So yes, an alternative method for assessing functional vision is certainly needed in my opinion and would make a wonderful PhD project for multi discipline studies. There is work going on in Wales to look at optometrists providing CVI but the criteria are still specific and defined by law at present so a cogent argument to alter the law would be an interesting exercise but that is a long-term project and may or may not be successful.

We need the certification system in place for statistics, planning services and registration to social services. Also, certification provides the only ongoing statistics on blind and partially sighted people in England and Wales. The CVI statistics provide the basis for the government Public Health Indicators so losing them would lose a direct line to pressure government to commission and provide services. 

Receiving certification can be life changing as it significantly improves lives, yet ophthalmologists admit it can be difficult to ascertain if it is appropriate to certify a patient, especially if they have a long-term condition. This surely illustrates the need for a more consistent approach and to question why some patients are declined.

Rehabilitation for blind and partially sighted people should be provided irrespective of a person’s eligible needs so immaterial of Certification or Registration. RNIB’s description of the Care act is useful here: https://www.rnib.org.uk/nb-online/understanding-care-act Our Seeing Beyond the Eyes project and the work done by RNIB and others regarding Eye Clinic Liaison Officers is a key component of this as signposting support is more likely to provide swift support than either certification or registration. The third sector obviously plays a key part in the support of people with sight loss whether or not they are certified or registered

I know of many patients who meet the criteria yet are not offered certification so does the system within ophthalmology need to be reviewed to address this? Optometrists also have a duty when they know their patient meets the criteria, but is not offered certification, to re-refer them for assessment.

Patients and eye care professionals, do you think changes are needed and if so, what and how?

To find out more or to comment on the above, email [email protected]

Smart Home Technology Increases Access and Independence for Blind and Partially Sighted people

GUEST POST: Daniel Williams, Founder of Visualise Training and Consultancy, looks at how smart home technology can be life changing for blind and partially sighted people

As the world becomes increasingly digital, it brings welcome channels of communication and independence for people with visual impairments. The latest development is Self-Monitoring Analysis and Reporting Technology (SMART) – better known as smart home technology, which uses internet-connected devices to interact remotely with your electric appliances and systems, at home or away. Smartphones, tablets, smartwatches and other personal electronics can be used.

Most people with low vision love the thought of speaking, especially when you can avoid squinting or fidgeting with fingers to do things and this is the great advantage of smart home technology – you speak, it does the task!

Speak up please

For a blind person, the simple, everyday action of locking a door, fiddling to get the key to fit and activating an intruder alarm with the correct digits, is a real fumble. As for adjusting your home lighting when you have low vision, it’s a constant battle to get it right in each room with seasonal and daily light fluctuations.

Not so with smart lighting; locking up is one command and getting just the right level of light for you in your home is a breeze. Your voice will instruct the exact shade of white you require, with minimal glare and you can pre-set with a single command or let motion sensors automatically activate.

Blowing hot and cold

What setting do you leave your heating on when you’re away from home? Too low and pipes might freeze and burst, too high and you’re wasting money and energy; and then the weather changes.

For a blind person, it’s a performance adjusting anything but if you can just say what you want to change or pre-set, it’s so much easier – “Turn my heating to 19 degrees” – simple, efficient and you don’t even have to say please! If you’re worried about an icy winter or a dodgy pipe, just speak. For those muddling times trying to remember whether you left the iron on or not, a sensor can inform you if you have left an appliance on by mistake.

Music and audio books made simple

Music is often an important part of life for many blind people and audio books are a must-have. Instead of trying to locate your favourite tracks or books on your device or wait until you arrive home from work to find and play, just use your voice assistant and ask for whatever song, artist or audio book you like. Why not have them playing in whatever room you like, timed for your arrival home or on command? Relaxing, without all that access bother, is bliss.

The phone is a visually impaired person’s best friend. But even with a decent screen-reader tool or keyboard location dots, it can mean trial and error. Far easier to put in a request to ‘Call my optician’ or ‘Call Sam or Dad or whoever’. With a voice search system, you can tell it to dial up a local service such as an eye clinic, leisure centre, gym or other organisation and be connected in seconds.

What’s in the news today?

Keeping up with the news can be hard if you have low vision and especially if you can’t read Braille or reading large print and glare causes problems and checking before an outing if you need to take a brolly, a sun hat, or both, is a daily British dilemma! So, to get random facts, figures and information from the internet or ask about a local business service with your smart home technology voice control, just say the words.

Appointments for today

Appointments and reminders for the eye clinic, GP or optometrist can be the bane of a visually impaired person’s life, too. They are often not sent to you in large print and it’s too easy to be forgetful, so connect your calendar to your voice friend and you can be reminded in advance and get a nudge when it’s time to next book in.

Find out more

To find out how Daniel and the team at Visualise are driving inclusion and accessibility for blind and partially sighted people, visit https://www.visualisetrainingandconsultancy.com/

SIGHT LOSS: MY UNSPOKEN REALITY

GUEST POST by Elin

I’ve always had an honest approach when it comes to writing about sight loss. If you scour through my blog’s archives, you’ll find posts on anxiety, loneliness, bullying and the misconceptions, just to name a few. I think that the fact I’ve offered a window view into these strands of my life is testament to that honesty. The window is very much open. 

I often have unfollowed threads of thoughts floating around in my mind and so today I want to weave some of those together in order to muster a post about some of the things that haven’t made it into the spotlight on here, yet. 

So it’s happening: I’m plucking up the courage to talk you through some of those thoughts, my untold truths, because not only will it help me to get them out of my system to some extent, I hope it means that I’m able to capture some of the unspoken realities of life with sight loss.

But of course, this is only a reflection of my own experiences and not a representation of everyone living with sight loss so please do bear that in mind. However, if you can relate, don’t hesitate to reach out, maybe we can be each others’ virtual shoulder. 

Now, after a slightly longer introduction than I anticipated, let’s get into the nitty gritty of today’s topic, shall we?

Oh and apologies in advance if this doesn’t follow any particular structure, it’s very much a ‘think about it, write it’ kind of post so please bear with me. 

THE UNTOLD TRUTHS

As the freshness of autumn lingers in the air, I’m sure we’re all looking back on summer with a longing feeling for all those times spent with family and friends, the memories we’ve captured and stored away in a happiness filled arena in the corner of our minds. 

I’ve had some amazing moments this summer but some of which have been shadowed by my disability, inviting a variety of previously unexplored feelings whilst also igniting emotions and anxieties that I know all too well.  

Let me talk you through a scenario; it’s 3am and I find myself drifting in and out of sleep, once I start sinking into an unconscious, peaceful landscape, a sudden thought catapults me into an awoken state again and I’m met with many unanswered questions to ‘entertain’ my brain during this twilight hour. 

The cogs are well and truly turning and I have to admit defeat to the thoughts that rally around.

I had been somewhere the night before, setting out with a hopeful mindset for a good time. And I think everyone did, have a good time that is, but as I stood there, being met with a blurred and increasingly dark canvas, I couldn’t help but let sight loss dictate how I felt that evening. 

Unsure of who was around me and who we were talking to, I let my mind stray into a pit of urgent questions, the conceptual ‘Why me?’, ‘Why does this have to be my reality?’ – questions that inevitably lead to unspoken answers that I might never hear. 

I realise that whenever I’m in this kind of situation, all my anxieties are alerted, the red light switches to green and all the cars come rushing past with urgency, a rush I try to ignore but it keeps on coming and I’m left feeling like an outsider, I’ve let my vision impairment lead me to my own secluded bubble and all I want is for it to pop so I can feel included like everyone else. 

This anxiety often steers me into a ‘should I or shouldn’t I’ debate when asked to go to a big gathering, a pub or a party because I know I won’t enjoy the experience as much as I’d like to. 

Not being able to see those around me or recognise the voices of those I’m talking to when everywhere is strewn with people, it’s a situation I find to be incredibly difficult and so the thought is a trigger to so many others that remind me, I can’t see. 

A wave of anxiety often rushes over me and when it crashes, I let it scupper the enjoyment. 

And that means I’m often there, statue like, feeling slightly cast aside with my own realm of thoughts, an outsider, looking in on everyone else. Only the lens I’m peering through is knackered and its focus won’t get any better after a click of the on/off button.

Now its something past 3am and the rallying of thoughts continues. The next day, I play tribute to a quiet mouse, unable to voice the difficulty of the night before. 

Dramatic? Maybe, but a reality I live each time I’m in a big crowd of people. I wanted to manifest those feelings on here because I think it’s important that people know. 

Saying no to going places as a result of this is something that encourages a whole other pond of thoughts and wonderings. It can spiral into the fear of missing out along with the urge to hunt down Harry Potter, maybe he can cast a spell that can make this go away. 

If you’re not a regular reader then you should know that I’m not usually this negative but I think it’s important to introduce this side of the story, you can’t get a full understanding of the book if you don’t read every chapter after all. 

Although I’ve accepted most aspects of my vision impairment, I’ve come to know this feeling of neglect and sadness, it’s not a constant feeling, an occasional visitor rather. Usually something dormant but when it creeps forward, it propels me into a space inhabited with anxieties, the thought of being different and a few other emotions I don’t usually entertain.  

I imagine that I’m not the only one that slips into this scenario. I’m sure we’re all met with unwanted spirals of thoughts sometimes, things that explode into a flurry of light and colours, encouraging another to set off. 

This is what has been happening to me lately and it’s proven to be quite the conundrum. 

In the last few years sight loss, in every facet of its being, has proven to be a long journey laden with feelings of grief, upset and frustration. I talk about the latter quite often, the frustration of missing out on the visual aspects of life to the bitterness of the fact that independence doesn’t always come easily. 

But grief – grief – has been a big part of my journey that I haven’t addressed much before. I think it deserves a lot more attention now because it’s the root of so many other feelings that can sometimes drag me down.

I’ve found myself saying ‘I can’t see that’ and ‘I can’t see you’ a lot more than I used to, it’s more than certain a daily occurrence and it can be a difficult reality to comprehend. Those words are reminders of how much has changed. Symbols of, well sight loss, and how much of my eyesight has faded. 

The grief of that fade has been a struggle in itself. It has always been there and I’ve learned to exist with it but sometimes it becomes more prominent, creating knots that I’m not quite sure how to untangle. 

That’s why I’m writing this. Sometimes all those frantic feelings need to be addressed and the only way I know how to, in the best way, is by writing. What I find to be the most cathartic of things, something that helps me to express each thought and to decompress them until the knots aren’t so tight. 

The things I’m mentioning are symptomatic of a little more deterioration in my eyesight so despite the struggles I’m expressing here now, I know I’ll be able to pull through. These kind of feelings can filter down to us without invitation and when they’re too headstrong to be pushed aside, it’s important to acknowledge them. Without talking or writing about them, the quiet, insidious thoughts can swell in size, pushing us closer to the edge of defeat so if you’re struggling with anything right now, no matter how big or small it is, please reach out. 

As my vision deteriorates, I sense another layer of my world unfolding and it’s hard to know how to react to it at times. As yet another small percentage of eyesight slips through my fingers and its impacts sets in, I’m left feeling scared, powerless in what’s happening. 

And this guides us nicely into the fact that sometimes, there’s apprehension tangled with the sparse knowledge of what’s to come. It takes a lot of strength to overcome that. Sometimes that strength falters a little and it’s left weakly clinging on, like autumn leaves trying to hold on to those last few moments on the branch. 

But that’s it, nothing is ever going to be plain sailing. Despite having a positive view of my disability (most of the time, it hasn’t shined through today but it’s still there, lingering somewhere). I’m still adjusting, still accepting and adapting aspects of my life to make them accessible to me. 

Whilst I’m committed to a positive outlook, I want to show that there are still negative moments, difficult times, tricky situations and things that I want to go in the opposite direction of and avoid completely. 

Anxiety, upset and uncertainty still exists and you know what? That’s ok. It doesn’t matter if we grow and develop from them, it just matters that we allow ourselves to feel these things and that we’re able to be honest about how they affect us. Then we can start focusing on what the next step forward will be. 

There is a sea of people adapting to life with sight loss, adjusting to the harsh realities of being blind or vision impaired. Some of us might be able to swim better than others but there are still times when we’re all frantically treading the water underneath, trying to fight against the current. 

That’s only natural, for anyone. 

I guess what I’m trying to convey today is that life with sight loss can feel restricting sometimes. 

There are times when I’ve felt my teenage and early adult years have suffered for this restrictive feeling. Living with sight loss means that I can’t always offer a ‘yes’ when my friends ask me to go out with them because of the anxiety I feel when in busy places, it means that I can’t be spontaneously independent and go somewhere without planning ahead and it means that sometimes, just sometimes, I’m overwhelmed by what impacts it has on my life. 

However, and this is a big however, what it does mean is that I have a different view on life and I try to use that to my advantage. Despite the negativity, I try to adopt a positive mindset and that’s something I’m managing to achieve, or so people tell me. I realise that there is a glimpse of something good or positive in most situations and I try my best to hold on to that as best as I can. 

Sure, sight loss has meant that my life has unfurled in some cases and there will always be certain aspects of my disability that I’ll continuously try to adapt to but having cracked some of the code, there are some things that make more sense. They’re the glimmers of light that sparkle and from those, we can grow and adapt to different possibilities. 

There are different lessons to learn during the negative moments and through them, despite their difficulty, we can witness and adopt a whole new perspective. Equipping us with something so powerful that we realise we simply weren’t aware of before. 

We’re sometimes thrown off track in life, unwanted feelings are invited into our minds and it can be difficult to know how to push them out again. But in time, we begin to understand the core of each thought and from that we can find the best way of acknowledging it and moving forward, learning how to navigate back on to the path. 

We’re all entitled to dedicate some time to becoming accustomed with whatever challenge we face and to understand the foibles that come alongside them. Difficult moments are inevitable but when we address them in a way that best suits us, we can cycle on through and grow along the way. 

And breathe…

This, despite it being thousands of words long, by no means covers each thought but I have talked through quite a few. Maybe others will sprout up on to the page one day but for now, this is enough. 

Although I haven’t been the most forthcoming when it comes to sharing about sight loss over the last month or so, writing about these things today almost feels like a confrontation to the things that have built up over the last few weeks. 

I’ve somehow felt confined to the narrow parameters of my disability and what consequences that has for me but now – now – I think I’m finally slowly graduating back into the mindset that everything will be ok. 

Because ultimately, it will be, even if that knowledge isn’t always clear. 

If you’re still here, reading this, then I raise a glass to you. Thank you for reading through my flurry of thoughts.

Are there any elements of what I mentioned today that you struggle with too? I think it’s important to open the conversation about some of the quieter subjects relating to sight loss or disability in general so if you have something you’d like to share, please do get in touch. I for one feel reassured when I hear that I’m not alone in what I feel and I’m sure others can share my relief in that too. Let’s break some of the silence surrounding the topics that deserve to be heard.

Elin x 

You can find Elin’s blog, My Blurred World here.