What it’s Like to be a Support Worker in the Sight Loss Sector

Previous to my current role at East London Vision, I was a support worker to a vision impaired person, and at first I was not sure what a support worker was.  After a general chat about my role with my client I had a better understanding of what my responsibilities were.

Let me tell you this- being a support worker is a role that comes with a high level of responsibility.  This officially means the person being supported must be at the centre of everything at all times when on the job!

A support worker’s day is driven by the person they are supporting.  I found that no two days were ever the same, which was great!  I had to remember that I was there to support the person and enable them to do their job and not take over it!  I supported them with tasks like preparing reports, giving presentations, reading the post and completing forms.  I would also help provide emotional support to patients at the eye clinic.  However, members of staff would think they had a new team member and would try to delegate work to me!  But I and the person I was supporting would quickly remind staff that I was not working for them.

In addition, I met people who would speak to me rather than the person I was supporting.  This was upsetting for both myself and the person I was supporting, but we soon learned how to resolve this.  If a person spoke to me, then I would not respond, which quickly led to the person realizing who they should have been addressing in the first place!

Most of my happiest years were working as a support worker because I truly loved my job.  I learned a great deal from the person I supported because they made me look at things from a different angle.

Over the years I formed a close friendship with this person.  We learned to trust each other because we worked closely together almost every day, and we’ve even shared many laughs.   I’m happy to say we’re friends for life!

 

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Christine serving tea to Graham at the ELVis office

Written by Christine Edmead, ELVis Communications Coordinator

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Managing Your Food Allergy When You’re Vision Impaired

As a partially sighted individual with food allergies, managing my allergies has been challenging.  For example, when I’m eating at a restaurant, the menu isn’t always written in large print, or when I go food shopping, it’s often difficult to read the ingredients on food packaging.  Because of this, I’ve learned to take a proactive approach towards managing my allergies so I’m able to eat safely at home or when I’m dining out.

I hope you will learn something from my advice to help you better manage your food allergies.  Even if you don’t have a food allergy, you may know someone who has one so you can pass on the advice to them.

Firstly, get to know your allergy medication.  If you have little or no sight make sure you have a feel of what your medication looks like.  If you carry an Epipen then it’s vital that you’re trained how to use it.  You can book an appointment with your allergy clinic at your local hospital via a GP referral to get training.  Moreover, if you carry different medication, you can add labels on them to tell them apart easily.  A list of different types of labels (i.e. audio, tactile) sold by the RNIB can be found by clicking on this link: https://bit.ly/1Z7pOsy.  Also, remember to have your medication next to you at the table when you’re dining out so it’s at arm’s reach if you ever need it.

Secondly, use assistive technology.  There are many smartphone Apps such as the Seeing AI app which can read back to you if you point the phone’s camera at text.   If you aren’t tech savvy or own a smartphone, don’t be shy to ask someone to help you read the menu or food label.  If you have some sight always carry around a hand-held magnifier.  At home, use large print labels on food containers, or you can use different numbers of rubber bands to identify different tinned products.

Thirdly, this one may seem obvious- tell people about your allergies.  When I dine out, I always notify the server or restaurant manager of my peanut and tree nut allergy so they can check if they’re able to provide me a nut-free meal.  Furthermore, talking openly about your allergies raises awareness as you’ll be surprised that not everyone knows that having a food allergy can be fatal.

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Image of foods likely to cause allergies includes shellfish, nuts, dairy, alcohol and fresh fruits.

Written by Ray Calamaan, ELVis Communications Coordinator

Using a Smartphone as a Light Detector

As a blind person, there are often times when I need to be able to detect sources of light.  This may be to see if it is light outside, if an electric light has been left on, or if the power LED on an electronic device is on.  In the past, RNIB sold a device about the size of a marker pen which gave out a sound that changed according to the level of light that it was pointing at.  Sadly, RNIB no longer stocks this device, but fortunately it is possible to use a smartphone to do this.

Recently everyone in the building I live in got new door phone systems allowing people to call the flat they require from the outer door and be let in.  This door phone system has a privacy setting so you can choose not to hear if someone rings your door.  When privacy is switched on, there is a LED that glows to indicate that it is on but there is no other way of knowing whether privacy is on or off.  The button that turns privacy on and off is like a doorbell so you can’t tell by the position of the switch.

Fortunately, there are a number of apps which turn a smartphone into a light detector.  I have used two of them on the iPhone and both these apps are free.  Both detected the presence of the privacy LED on my door phone.

There is a standalone app called Boop Light Detector.  When in this app the phone emits a tone which changes according to how much light there is.  It can also vibrate and the vibration gets faster the more light there is.  This can be useful if checking for light in noisy environments.  The App Store link to this app is https://itunes.apple.com/us/app/boop-light-detector/id1134857212?mt=8&ign-mpt=uo%3D8

Some time ago I reviewed the Seeing AI app from Microsoft which you can read here.  This app has been updated and one of the new features is the light detector channel.  This produces a tone which increases in pitch the more light there is.  At this time there is no vibration feature but if you are used to using Seeing AI then this could be a good choice.  The link to Seeing AI in the App Store is https://itunes.apple.com/us/app/seeing-ai-talking-camera-for-the-blind/id999062298?mt=8&ign-mpt=uo%3D8

I have been advised that there is an Android light detector app called Free Motion Light Detector.  The Google Play Store link is https://play.google.com/store/apps/details?id=com.visionandroid.apps.motionsensor&hl=en_GB

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Photo of a man pointing his smartphone towards a light in the ceiling. Image is from Google Images.

Written by Graham Page

What It’s Like to be a Blind Mum

Growing up I enjoyed looking after my younger siblings and cousins, so I knew I wanted children of my own one day.  However, when I was 17 years old I was diagnosed with retinitis pigmentosa and told that I would lose my sight in the matter of weeks, months or years.

I stopped dreaming about having my own family again until I met my future husband at the age of 21.  Soon after I got married I was blessed with my first beautiful daughter.  This was also when I noticed that my eyesight was deteriorating for the first time since my RP diagnosis.  Because of this, I became a very hands-on mother.   I needed to feel things as I couldn’t rely on my eyes to see.  Moreover, when my daughter started to walk I had to find ways to be able to locate her.  I’d dress her in brightly coloured clothes and shoes that squeaked.

Four years later I was blessed once more with my second beautiful daughter, and unfortunately found that my sight was deteriorating further.  My eldest daughter was a big help in being my eyes. For example, she would read to her baby sister, which was something I could no longer do.  Being a VI mum of two girls was challenging at first, but I taught my daughters to be aware of my sight loss, and they have good knowledge of my eye conditions and mobility aids like the white cane.  I feel confident to rely on my daughters to guide me and give me verbal cues when I’m out in public or at home.  I’m very proud of them both.

Finally, I’d like to say to all VI mum out there that you are doing an incredible job.  Keep on being the great mum that you are!  If you’re vision impaired and thinking about starting a family with your partner it’s natural to have lots of questions.  A genetics counsellor would be your first point of call if you’re worried about passing on your condition.  I would also speak to other visually impaired parents.  There are plenty of blind parent’s forums online to ask questions and seek advice and information.

What can I say?  Being a mum is an amazing experience and I love being a mum to both my wonderful and perfect daughters.

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Image of Bhavini in a bright red dress with her daughters.

Written by Bhavini Makwana

Edited by Ray Calamaan

A Fully-Sighted Person’s Perspective of Working in a Predominantly VI Organisation

Before I had my interview for this job, I had never knowingly had a conversation with someone who was vision impaired.  Suffice to say, once I was offered a position at East London Vision, I had a lot of learning to do!

People sometimes ask me whether there are any differences when working with vision impaired colleagues, and the fact is that there are some small adaptations that I make on a daily basis.  For example, I’ll sometimes be asked to choose the photos to add to a colleague’s piece of work, or if we’re going to an external meeting at an unknown venue, my colleagues might ask me to meet them slightly earlier at the nearest station to help guide them to the location. These are all very minor adaptations that don’t take me much time, and have little effect on my everyday workload.  In fact some adaptations, like describing our surroundings or giving verbal cues instead of nodding or using facial expressions to communicate, are now so ingrained that I find myself doing them even outside of work with sighted friends!

The biggest effect that working with vision impaired people has had on me is probably how much I have learned.  One of the main skills I have gained is sighted guiding, which I do on a regular basis.  But despite having been guiding various people for the past two and a half years, I’m still constantly learning.  I once told someone in a bus that they were able to sit down, but neglected to tell them that the free seat was the aisle seat and not the window seat, which resulted in them trying to sit on someone’s lap.  Suffice to say, I now always specify which seat it is that’s free!

Perhaps the most important thing I’ve learned through my time at ELVis, though, is how much is possible for people with sight loss.  Losing sight is often something that fully-sighted people are very afraid of, and people will often say they’d rather lose their hearing or a limb than lose their sight.  However, since working with many VIPs and seeing how they’re able to live a life that is just as (and often more) active than mine, I have to say that the thought of potentially losing my sight in the future, while of course it would still be difficult for me to adjust, is no longer the scary prospect it once might have been.

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Nicola filming a Vision Awareness training video with Alex Pepper and his guide dog in front of the ELVis office in Leyton.

Written by Nicola Stokes

What to do When You’re Being Ignored

I have two questions I’d like to ask vision impaired people – are you fine with someone talking on your behalf? And do you think it’s acceptable for others to talk to your sighted guide and not to you directly?

My view is that when somebody speaks for you it can be quite demoralising and it can leave you feeling worthless, frustrated and hurt.

Recently, I’ve been situations where I’ve met people who would talk to my sighted guide instead of talking to me.  For example, whilst attending my hospital appointments, there were doctors, consultants, surgeons and nurses who would talk to my husband all the time.  It got to a point where I felt very upset and annoyed.  It forced me to speak up and ask them to speak to me directly because, after all, I am the patient! And my husband isn’t with me all the time. However, despite being seen regularly at the hospital, I still have to remind them that I’ve only lost my sight and not my ability to communicate!

Another question I’d like to ask is – should we be more forgiving when it comes to family?  I think in some ways our families should be more supportive and inform others that you, as a vision impaired individual, are capable of speaking for yourself and it is important you’re spoken to face-to-face.  The same applies to work colleagues, support workers, friends or anyone who has a habit of speaking on your behalf.

It’s commonplace that when we lose our sight, we also lose our confidence and independence.  And, to an extent, our voices disappear as we struggle to inform others of how we’re feeling and explain what’s going on, whilst trying to make sense of the situation ourselves.  So next time anyone talks to your guide, kindly let them know that it is better if they spoke to you instead of your guide.  In fact, talking with others is very important for visually impaired people as it helps us to recognise voices so we can remember who the person is.

Furthermore, if you’re going to initiate the conversation, then asking your guide to point you in the right direction and letting you know when you’re in front of the other person will help you start the conversation.  Sometimes, VI people need some assistance from their guide to face the person being spoken to and being told when the person has left the conversation.  There have been many times when I’ve been left to talk to myself- how embarrassing!

So the next time you are in a position where others are continuously talking on your behalf, then let them know how it makes you feel and explain some of the tips I’ve mentioned on how they can support you to maintain your independence.

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Bhavini (left) with her support worker Kam (right).

Written by Bhavini Makwana

What We’re Looking Forward to in 2018

For our very first blog post of the New Year, we would like to share our aspirations and resolutions for 2018.

Masuma, ELVis CEO: “I’m not one for New Year resolutions as I don’t believe in setting myself up for a fall at the start of the year.  If the plan was to be healthy, it wouldn’t have lasted long as I would’ve broke that on Tuesday 2nd Jan with a chocolate doughnut!  However, I’ll be burning that doughnut off with plenty of walking as my challenge for the year with team Look Who’s Walking is to be the first VI group to complete the Peak District 50K challenge in 12 hours in September.  Watch this space for further updates.”

Nicola, ELVis Service Development & Delivery Manager: “People often talk about how others will complain about people behind their backs, but I find that we often compliment people behind their backs, too.  For example, when telling my family about my day I might mention how much I appreciated a work colleague’s advice, or I might talk to one of my friends about how smart I think our mutual friend is.  But if the person we’re talking about isn’t there, they’re never going to know that I think that about them, and I think that can be a shame.  Therefore, my new year’s resolution for 2018 is to go out of my way to compliment someone at least once a day, because everyone can do with a little pick-me-up sometimes :)”

Bhavini, ELVis Activities Coordinator: “2017 was a great year where I developed new skills, met really great people, enhanced on aspirations and tried a lot of new things I thought were impossible to do as VI person.  ELVis provided a wide range of fantastic activities and speaker last year, and this year will be no different.  I will be working towards in making events and activities enjoyable for all our members and provide guest speakers on really useful matters that are important to VI people.  So make sure you’ve signed up to our newsletters and keep updated on what will be going on.”

Ray, ELVis Communications Coordinator: “I’ve been working for ELVis for nearly a year now and it’s been really great so far working for such a fantastic team.  I’ve loved meeting all the service users and look forward to meeting many more in the coming year.  Don’t forget to visit our Facebook and Twitter pages to keep updated on all our upcoming activities and events across East London.”

Christine, ELVis Administrator & Information Officer: “I would like to take this opportunity to wish everyone a Happy New Year.  At this time of the year everyone is thinking about the past year and what New Year’s resolutions they will be making and nine times out of ten breaking.  I have decided not to make any New Year’s resolutions this year in order for me not to break them.”

Graham, ELVis Assistive Technology Adviser: “I have never really been one for New Year’s resolution, but the New Year is a good time for those interested in technology to look to the future.  Artificial intelligence (AI) is likely to be big this year.  It’s already featured in high profile bits of technology for visually impaired people including the Seeing AI app from Microsoft which for the first time allowed vision Impaired people to read handwritten text at a truly affordable price of 0 providing you have an IPhone.  At the other end of the scale we have Orcam.  At over £2200 for the basic model it’s not cheap but look out for smart glasses that can be used in conjunction with apps on smartphones for various purposes.  We will see big price reductions in this field I am sure.”

From everyone at East London Vision we hope you have your best year yet!  If you have a New Year’s resolutions or an aspiration for 2018 let us know in the comment section below!

Written by the ELVis team