Disability Awareness

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What I’d Like You to Know about My Blindness 04: I Don’t Have Super-Abilities

The image shows Lois using her sense of touch to explore the Athens Museum

You wouldn’t believe how often people ask me if my blindness has given me extra sensory abilities – whether I can hear, scent, and taste better than a sighted person, and have a more sensitive sense of touch.

My honest answer? I don’t think so.

I don’t believe my other senses have improved since losing my sight. But I do believe that I pay them more attention than I did when I was able to rely on my sight. Which means they may appear to be better than they were.

When I was sighted I relied most on my sense of sight to give me input. I believe most sighted people do the same thing. Since losing my sight, I have used the input I gain from my other senses to fill in the gap caused by my visual impairment. My ability to interpret the world around me is dependent on what I can feel, hear, and smell. So I pay far more attention to the input I gain from my other senses than I used to.

When I’m walking to our local train station I use my other senses to help me identify where on my route I am – whether it be the scent of a particular plant, or the sound of a specific dog who always barks at Fiji and myself as we pass. Whether it’s a patch of gravel that helps me realize I am approaching the station itself, or a dip in the road that identifies the spot where we need to turn and cross the road we’ve been travelling for the past 10 minutes. My other senses compensate for my lack of sight and help me navigate the world.

My lack of sight means I experience travel very differently. Of course I miss out on the sightseeing that a sighted tourist would be able to do. But I regularly pick up things that a sighted person, who relies primarily on their sense of sight, might miss. For me, travel is a multi-sensory experience that incorporates every sense I have at my disposal. Which gives me a vastly different, but no less rich, experience of a destination.

When was the last time you focused on the input you could gain from your other senses? Why not take a moment to notice what you hear? Smell? Touch? And see what an extra dimension your world gains. Now, imagine doing the same when you are next in a new city or country.

There is so much that I wasn’t aware of because I was able to use my eyes to interpret the world around me. I’m not saying that my other senses completely fill in what I used to be able to see, but they certainly give me an alternate way to explore the world.

What I’d Like You to Know about My Blindness 03: Don’t Assume I Need Help

Lois using a phone

One day a courier delivered a package to my home. This was back before the pandemic changed the way we live our lives. Back in the day when couriers expected you to actually sign for a delivery.

On this particular day, the courier handed me the parcel and started to walk away.
“Excuse me,” I said, “Don’t I have to sign for the parcel?”
“Don’t worry,” he said in all seriousness, Ï know you can’t write so I signed it for you”
And then he left. While I stood there, stupefied with shock.
It’s not the first time that’s happened. And usually I make a point of calling the courier back and showing him that I am quite capable of holding a pen and signing my name on the delivery papers. But this time it simply happened too fast.

In truth, I can almost certainly do more than people believe I can. I think it’s because they don’t understand the techniques I use to accomplish tasks, and automatically assume it’s not possible. Which is why so much of my work is about explaining the tools and techniques I have at my disposal as a blind person.

Even people who know me well sometimes struggle to understand what I can and cannot manage, and occasionally default to assuming that a task is not possible for me. A colleague who has known me for several years once offered to make tea when she visited me. Because she thought I couldn’t do it myself.

I understand that people are often just trying to help. My husband sometimes gets frustrated when he offers help because he sees me struggling with a task. And it’s true he could probably do it quicker and easier than me. That’s part of the reality of being blind – things just take longer.

So, why do I insist on struggling? Mostly it’s to prove that I can live an independent life, not only to the world, but also to myself. But it’s also because I have a nagging fear that if I fall into the trap of letting others do things for me, that it will undermine my confidence in my own abilities.

While that fear might sound groundless, it’s happened to me before.

After my previous guide dog, Eccles, retired, I spent two years without a guide. During that time I depended heavily on my family and friends to help me get around. And I became exceptionally good at obeying their verbal instructions – when they told me to step up, I would do so; when they tole me to turn right, I would do so. I became a perfect little robot!

What I didn’t realize was that I was slowly losing the ability of interpreting the world around me using my own senses. Until I was on training with Fiji, my new guide dog, and it became horribly clear how out of practise that skill had become. Happily, with a lot of support from the guide dog trainers and my beautiful young Fiji, I managed to rediscover those skills and everything worked out fine.

But that fear is still with me. And it’s one of the reasons I feel uncomfortable letting people help me.

SoObviously, there are some things that I can’t do because of my blindness. And, of course, it’s not always imperative for me to refuse help all the time. But it’s also unnecessary for me to spend every minute of every day proving that I can do things independently. But it’s difficult to find a balance.

What message do I want you to take from this article? There are two – first, to understand why I am sometimes stubborn about struggling to accomplish tasks on my own. And secondly, that I can almost certainly do more than you think I can, even despite my blindness.

Next time you feel compelled to reach out and do something for me, please rather just ask if I need help. Then it’s up to me whether I accept your help, or if I want to do it myself. Even if it looks like I’m struggling, respect my right to make the choice. Even better, ask me what tools and techniques I’m using, so you can understand my world a little better.

What I’d Like You to Know about My Blindness 02: We See Different Things

The image shows a close-up of Lois face.

When I first lost my sight I could see streaks of bright gold light when I was in direct sunlight. Over the years I’ve lost that ability.

Last week I wrote about the fact that blind people are not all the same – that we have individual strengths and preferences in how we accomplish tasks. The same can be said of our blindness – blindness is a spectrum that covers a range of degrees of visual impairment and partial sight.

Basically, I’m saying that we all see different things.

Even those of us who are totally blind may have different experiences of how that appears to us. For me, as an example, I “see” a blank background colour that differs (I think) as a result of the level of light in my immediate surroundings. It can be any base colour from a rose pink to a dark gray. But that’s not all I “see”

My vision is filled with a constant flickering of pure white, gold, green, red, and blue pinpricks of colour that flash on an off as I watch them. I often refer to them as being like visible pins and needles. They are very pretty and are constant – whether my eyes are open or closed.

But most of my friends who are totally blind “see” something different.

Looking beyond those of us who are totally blind, I have friends who have various degrees of residual vision. Some can still see a computer screen, though they need to use a screen magnifier to be able to read what is showing. Some can see blurred outlines of objects around them, but only if there is a significant contrast between the colour of the object and the environment around it. Some have a little usable vision during the day but are night-blind. And some people have eye conditions that mean their levels of vision varies from day to day.

There are almost countless variations on what we can each see as a member of the blindness and visually impaired community. Which is another reason why the tools and techniques we use may differ from one person to another – why some of us use mobility aids like white canes and guide dogs to navigate, where others may seem to be able to navigate around without difficulty in some circumstances and struggle in others. Why some of us have smart phones and computers that talk to us, and why some of us use screen magnifiers. And why on some days a particular person may see something that they may not see on another day.

In truth, visual impairment is a continuum that ranges through a wide variety of visual experiences. And that impacts on the way each individual member of the blind and visually impaired community engages with the world.

What I’d Like You to Know about My Blindness 01: We’re Not All the Same

the images show hands tracing across a braille bookI’ve been thinking a lot about what I’d like people to know about my life as a blind person – things that I wish were more commonly known that would foster greater inclusion of the visually impaired community into society and the workplace. Because they would help people to understand my world a little better.

I thought it might be useful to share some of the things I wish people knew about blindness in general, and my blindness in particular. This is the first of a series of articles in which I’m going to do just that.

The first thing I’d like you to know is that we are not all the same.

I understand how tempting it is to assume that all blind people are the same – that we all use the same techniques, can do the same things, and have the same preferences. But it is just not true. We are all different. While we may have blindness in common, we are individual people with individual strengths, skills, likes and dislikes. And we may use different techniques to accomplish a task. I have blind friends who can do things that I cannot. And visa versa.

Let me give you a few examples.

I am a guide dog user. I love having the ability of navigating the world around me with my beautiful Fiji walking beside me. Many of my visually impaired friends prefer to use a white cane. Both are effective ways of getting around. Neither is better than the other. They are simply different.

the images show Lois sitting at a computerI am not a braille user. I know how to read braille, but prefer accessing information on my computer using a screen reader, which is an audio programme that reads what is on the screen. That’s just my preference. Yet I know of many blind and visually impaired people who prefer using braille to access information. They have a braille display for their computer, read books in braille, and use a braille keyboard on their smart phone. Others may use a combination of audio and braille. It depends on each person’s preference.

A few months ago, my husband and I went to our local Mugg & Bean. I was presented with a braille menu. Which would probably have taken me a month to read – while I know the alphabet, my braille reading skills are almost non-existent. At the same time, I think it is commendable that the Mugg & Bean chain have braille menus for those who need them. Because many visually impaired customers will appreciate them.

I feel I ought to repeat the point of this article – to show that each individual blind or visually impaired person is unique. Some of my visually impaired friends will probably disagree with some of the articles I write in this series. And some will agree. Because we are not all the same.

So, while I would love for you to join me for this whole series of articles, please don’t fall into the assumption that what is true for me is also true for any other blind person you encounter. Chances are that they will feel much as I do – but it’s always better to take a little time to ask them about their own experiences and preferences.

Any idea what I’m going to write about next? Why not join me next week and find out…

Blindness, the Sense of Touch and Social Distancing

the image shows Lois wearing a mask 
the image shows Lois wearing a mask

Touch is important for a person who is visually impaired. It is one of the easiest ways to discover information about an object or the environment, either using your fingers or the tip of a white cane. But touch is also fundamental to the way a blind person communicates with other people. Which adds yet another level of complexity to the way we operate as we try to safeguard ourselves against COVID-19.

What do I mean by that?

When a sighted person is taught how to attract the attention of someone who is visually impaired, they are told to lightly touch the person on the arm or shoulder, and then identify themselves. Obviously, this isn’t an option when trying to social distance. Here’s a few suggestions I think might be an alternative.

Let’s say you are walking down a street with several people around, and see me approaching. If you know me, you can simply call out my name to attract my attention – from a safe distance, of course.

If you don’t know my name, it becomes harder. Unless I have Fiji with me, in which case I’ll probably take notice if anyone refers to me as the woman with the guide dog – I mean, how many women with guide dogs are likely to be nearby?
If I don’t have Fiji with me and you need to attract my attention, you could try referring to something specific about me or what I’m wearing – like calling me the lady in the red jersey, or woman in the blue raincoat. If you just try to attract my attention by calling out, “Excuse me!” I’m probably not going to pay attention – I’ll assume you’re talking to someone else and just continue on my way.

So, if you’re trying to attract my attention without needing to touch me, call out to me from a safe distance in a way that I know it’s me you’re talking to.

Touch is also fundamental when a visually impaired person is being guided by someone who is sighted. Even though we are trying to avoid unnecessary trips away from home, sometimes they are necessary. And sometimes we need a sighted person to guide us.

When this happens, the blind person would usually place a hand lightly on either the elbow or the shoulder of the person guiding them. Again, here are my thoughts on a few alternatives, taking the risk of COVID-19 into account.

Depending on the particular situation and what the people involved are comfortable with, there are several ways of guiding a visually impaired person. In the ideal world, a sighted assistant could walk a few steps ahead or beside me, and I would use my white cane or Fiji to follow them. It would make it easier to do so if the sighted assistant speaks or gives some other audio cue for me to follow. That way there would be no physical contact between me and the sighted assistant.

There are other ways to do it – using my white cane as a form of tether with each of us holding one end or, using some other form of tether like blind runners do. That way there would be some distance between me and the sighted assistant, while still giving us a secure way of remaining connected.

As a final suggestion, if physical contact cannot be avoided, I’d probably rather place a hand on the sighted guide’s shoulder and walk slightly behind them. Especially with the current recommendation to cough into your elbow, I’m certainly not going to be holding anyone there.
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As always, it’s best to ask the individual visually-impaired person what works for them – these are my preferences, but we are all different. So, it’s best to ask.

I’d like to thank members of the LCS Assistive Technology community for sharing their ideas on both these questions – I really appreciated your confirming my thinking on these topics.

Book Recommendation – Guiding Emily, by Barbara Hinske

the image shows the cover of the book Guiding Emily; the cover is a beautiful black Labrador

My previous article was about the non-fiction books I’ve been reading this year. Today, to show you that I haven’t been neglecting my love of fiction, I want to share a very special book with you: Guiding Emily, by Barbara Hinske.

I don’t often get to read books about people becoming blind as an adult. I guess it’s not really a popular subject for authors unless, like me, they have a personal connection with visual impairment. Yet, this is what happens to Emily, one of the main characters of Guiding Emily.

Guiding Emily tells the story of a young woman who loses her sight on her honeymoon – the impact it has on her brand-new marriage, on her family, friends, her work, and on the way she perceives herself. It’s also the story of Garth, a delightful young black Labrador who is determined to become a guide dog.

I found parts of Emily’s story hard to read because of the parallels with my own life. What Emily was experiencing emotionally, and the basic training she underwent, brought up strong memories of my own journey after I lost my sight. Emily’s journey is well researched and is credible – unlike some of the fiction books about blindness that I’ve read!

I’m sure I’m not the only reader who will find herself cheering Emily on as she triumphs over the mental, emotional, and physical realities of losing her sight and fighting her way back to independence.

I found the young Garth’s chapters of the story delightful. They were a tonic to brighten the more challenging parts of Emily’s journey. I laughed at his mischievous puppy self and the antics he got up to while being puppy-walked. He reminded me of my beautiful guides – Leila (who was also a black Labrador), Eccles, and Fiji. I could so easily imagine the puppy versions of my girls getting up to the same antics when they were being puppy-walked. Well, to be honest, I could also imagine them doing so after being matched with me. Which made the whole Garth part of the story even funnier and cuter for me.

Why am I telling you this?

My main reason for writing A Different Way of Seeing was to help people understand a little about the world in which I live as a blind person. I believe that we will only gain greater levels of inclusion in society and the workplace once people understand what we are able to do, and the tools and techniques we have at our disposal. Guiding Emily shows the way a visually-impaired person engages with the world around her. As Emily learns the techniques and tools, so too do the readers, even if they have had no previous experience with visual impairment. So, it is a great book for anyone who is interested to learn more about visual impairment. Not to mention that the book is simply an enjoyable read – with drama, betrayal, despair, triumph, and romance of a sort. But you’ll have to read it for yourself to find out what I mean.

Why not hop onto Amazon and get hold of a copy of Guiding Emily – I’ll bet you’ll fall head over tails in love with young Garth!

Social Distancing for the Blind Community

The image shows Lois walking along the side of a roa

As we all continue to experience the challenges of lockdown, social distancing is becoming almost a regular part of our lives. But have you thought about the challenges social distancing poses for someone who is blind or visually impaired?

A few weeks ago, my guide dog, Fiji, wrote a guest blog on my Beyond Sight Blog about her feelings about social distancing. Yes, it was a somewhat tongue-in-cheek perspective for me to share, but the challenges are real – and not just for guide dogs!

Here’s how I experience social distancing, and some of the ways you can help me, and people like me, to ensure we keep safe when we’re out and about.

If I’m walking along a busy road and there is masking noise, like passing cars or wind rustling tree leaves, I might not hear you approaching. So, I might get closer to you than is safe. It would really help me if you could recognise that I might not be able to take evasive action– either make a sound so I know you’re there, or take the initiative and ensure we are a safe distance apart.

The painted lines in shopping queues are invisible to me and my white cane (or my guide dog) Unless you’re aware of a shopping centre that has created tactile lines, I have no way of knowing where the marks are. It would really help me and my guide dog if you can give us verbal guidance of where we should stand, and when we can move forward.

Never before has the #JustAskDontGrab Campaign been so important for the visually impaired community. I, like most of my blind friends, have countless stories of people grabbing us in order to attract our attention, or in order to move us physically. Nowadays that is simply not a safe option. We need people to speak to us when offering help.

Yes, there are technologies we can use to help us maintain social distancing. I could use the Be My Eyes app and ask a sighted volunteer to help me navigate safely. Or I could make use of a Sunu Band, a band that is worn on the wrist and gives tactile feedback when I’m approaching something. Or someone. Both are options for me.

But let’s be honest, I’m not keen to wave around my iPhone when I’m out and about in public. It’s just asking for trouble. And the cost of the Sunu Band puts it out of reach of most blind and visually impaired South Africans.

Which means we have to do the best that we can using our own skills and the help of those around us. People like you.

So, next time you see Fiji and I walking down the road, please speak to us to let us know where you are, and be willing to step out of our way as we walk past. Next time you spot me in the queue at Blue Route Mall with my white cane, speak up and let me know how to move from one painted line to the next as the queue progresses. And please, please don’t reach out and grab for Fiji or myself to guide us – ask us what form of help will be most safe and most comfortable for us all.

Thank you – Fiji and I really appreciate your thoughtfulness!

Can You Think of Book Characters with a Disability?

Books

How many books can YOU think of with a disabled character? I’d love for you to drop me a message or a comment listing the characters and books you know of. I think it would be an interesting exercise for us all.

You see, if it’s true that art mirrors reality, then for every eight characters in the books we read, we should find one with a disability. Because that’s what the statistics from the World Health Organisation website tell us– 15% of the global population lives with a disability – https://www.who.int/disabilities/world_report/2011/report/en/#content

I understand some of the reason’s writers may not include us.

  1. They don’t see us out there in the world
  2. They don’t want to offend us
  3. They don’t want to misrepresent us.

Sure, I recognise that it doesn’t appear that every eighth person we pass in the street has a disability so writers may not be aware of how many of us there truly are. Also, many disabilities are invisible – psycho-social, cognitive, reading, some hearing impairments, to list but a few – so perhaps it appears we are a smaller group than we are. Then, because unemployment figures for persons with disabilities are so high, people don’t see us in the workplace. And sadly, sometimes when people do see us, they see the disability first and ignore the person as an individual. Finally, if you don’t have contact with a person with a specific disability, it may be hard to know what we can do.

I also understand the other concerns I listed. People have often told me they are nervous about approaching someone with a disability in case they cause offense by saying or doing the wrong thing. That’s due largely to a general lack of awareness of how we accomplish the tasks we do, the technology that enables us to live mostly “normal” lives, and the tools and techniques we have at our disposal. And yes, we are often scathing in our responses when we see a fictional character with a disability who is poorly represented. Or when disability is represented as being an unendurable catastrophe that cannot be overcome.

I want to challenge my fellow authors to be more inclusive when creating characters. Here are a few guidelines:

  1. Your lead protagonist doesn’t have to be the one with a disability; it could be a supporting character – but let us be included in the world you’re creating.
  2. Do your research – There is so much information out there about the way we live our lives as persons
    with disabilities, so research this as you would other aspects of your book. Or reach out to someone with the specific disability you’re trying to represent.
  3. Don’t be scared to ask for input – just as you have beta readers to give you feedback on your book, ask someone with a disability to do the same, preferably someone with the disability your character has; most of us are willing to help, I promise.

Books are by no means the only medium where we are under-represented. Movies and TV are much the same. I’m excited to notice an increase in the number of characters with disabilities over the past few years. But we’ve still a long way to go.

We’re by no means the only minority that face this situation – Recently I’ve seen articles from other minority groups and, in some cases, majority groups, who are not well represented in the publishing world and other media. It’s starting to shift, but I believe we need far greater diversity of voices amongst those writing books. Having said that, a note for other authors with a disability – don’t feel obliged to write only about disability issues – you should feel free to create whatever you want.

So, there it is: my challenge to authors writing fiction – help us feel more included and less invisible in the world you’re creating. Help us see the world we inhabit in the books we read. And help us feel that we’re part of society as we experience it in all ways.

Now, who’s going to start the list of books with characters with disabilities? I’d love to see how many I’ve already read and how many I still have to discover…

Are You Helping or Harming?

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Date: 24 March 2020
Category: Disability Awareness, Audio,
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**Craig, not sure if the podcast link will provide us with an image; please let me know
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You’re walking down a road and see a person with a guide dog or a white cane approaching you. Do you offer to assist them? And if so, how?

One day, an elderly woman grabbed my arm and propelled me across a busy road. Then she walked off, no doubt feeling good for assisting the poor blind lady. Here’s the thing – I didn’t need to cross that road. But she didn’t give me the chance to say so.

The topic of how to engage with a visually impaired person and offer help became a hot topic on social media recently, due primarily to Dr Amy Kavanagh’s #JustAskDontGrab campaign. The campaign aims to change the way sighted people offer assistance to those of us in the VVI (blind and visually impaired) community.

In many ways I agree with the aims of the campaign. If I’m standing at the top of a flight of stairs figuring out the safest way to navigate them, I might get startled if someone suddenly reaches out and grabs my arm. It puts me at risk of losing my balance and falling down those stairs. So, #JustAskDontGrab has its place.

But truthfully, it’s a bit more complicated than that. What if there isn’t time to connect verbally before I put myself into danger? What if it’s a noisy or busy environment where I might not realize you’re talking to me? You need to consider what’s happening there and then.

But here’s the thing, most blind and visually impaired people who are out in the world are very capable of navigating our way around it. Almost all of the time. Except for the very rare occasion when we’re not. And we’ll usually ask if we need help.

Am I saying you should never offer assistance to a member of the VBI community? By no means. Because maybe it’s the one time we actually do need assistance. Just please, , rather than reaching out and grabbing our arm, or our guide dog, rather verbally ask if we need help. And, if you think we might not hear you, lightly touch our arm and then ask.

It sounds so simple, right? Yet, there’s so much happening in that moment that you reach out – metaphorically, of course – to offer assistance. And that’s the subject of a conversation Jeff Thompson, of the Blind Abilities Podcast Network, and I had a few weeks ago.

I’d love for you to listen to the podcast and let me know what you think. Whether you’re sighted or a member of the VBI community, I’m interested to know your thoughts.

Besides, you never know – it may help next time you’re walking down the road and see a person with a guide dog or white cane and try to figure out whether or not to offer assistance.

Here’s the link.

And Then the Lights Went Out!

The image shows a blonde Labrador Retriever grinning at the camera

Last week I told you about the Love Your Guide Dog event that Fiji and I attended in Fish Hoek, Cape Town. I promised to tell you a little more about the fun evening we had.

I knew it was going to be a great evening when we arrived to be met by several other guide dogs, service dogs and pups-in-training. I mean, how could it be anything but brilliant with so many four-paws around! Fiji and I had a chance to catch up with some old doggy friends and their owners, and also to meet some wonderful teams we hadn’t met in person… umm… in dog? And all the furry friends were very well behaved – I don’t think I heard any growling or snapping from anyone. Though one or two of the pups did decide to add their voices during the guest speaker’s presentation.

Talking about the guest speaker, we heard from Zelda Mycroft, mother of inimitable ability activist Chaeli Mycroft, from the Chaeli Campaign. Zelda spoke about what it’s like being a mother to a highly independent and enterprising child with a disability – a refreshingly different perspective.

And then the lights went out…As did the sound…

And no, it wasn’t load shedding. It was actually a fault in one of the sub-stations and it left the whole of the Fish Hoek area without power for the rest of the evening.

From our perspective, I don’t think it placed much of a dampener on the evening. The organisers were well prepared for any eventuality – they had gas heaters to keep the food warm, and there were candles on the tables. Of course, for those of us without sight, it was pretty much business as usual. But we did see some creative problem solving going on, with people using the flashlights on their mobile phones to enable the sign language interpreters to communicate with the hearing impaired attendees, the servers being quick on their feet navigating their way round the many dogs stretched out on the floor, and speakers who suddenly had to contend with no amplification in a venue that seats 150 people… quite a remarkable feat all round!

Nor did the lack of illumination stop us from having a fantastic evening. Even if it wasn’t quite as we’d expected it to be.

If you’d like to find out more about the Love Your Guide Dog movement, here’s a link to their Facebook group.

Of course, you’ll probably fall in love with the many photos of beautiful pups-in-training. Don’t say I didn’t warn you!

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