It took me years to arrive at the conclusion that I needed a long cane. Even though it was the only practical solution to securing my independence, I was resistant. ‘The Cane and I’ is a mini-series that explains how and why I got there eventually. I’ll talk about why visually impaired people live as sighted people, my mental preparation for cane training and the beginning of my long cane journey. The long cane is a tool that is entirely practical, but carries significant emotional weight. This is worth talking about so people who can identify with my experiences can know that they are far from being alone.
Blind People ‘Faking It’: The Truth
Many visually impaired people rely on smart phones to navigate their surroundings and without them, some wouldn’t be able to go out on their own. This technology is vital to our independence, but our ability to use it has caused some people to make accusations of cane and guide dog users faking their visual impairment. Unbelievably, it is still not common knowledge that blindness is not binary. There are many variations of visual impairments that lead to someone using a cane or a guide dog, but there is no visual impairment that is a barrier to using a mobile phone. It’s hugely unfair that visually impaired people have been made to feel uncomfortable about using a smartphone in public due to those incidents that have been talked about in the media and it is time that people were told the truth about blind people ‘faking it’. Because we do fake it, but not in the way you might think.
It’s been said so many times before, but to understand what I’m about to share with you, you must remember that blindness is a spectrum and many legally blind people have some vision. It may be only in certain light conditions or in a tunnel at the centre of the visual field, or it may be blurred and distorted. What I’m going to describe in this post could affect blind people who have or have had, some vision and find themselves in a kind of limbo between sighted and blind. In these cases, it’s possible for visually impaired people to live as if they were sighted, until they reach a point where they can’t ‘fake it’ as a sighted person anymore. I’m no expert on the subject, but I did it for a long time, so I can see why it happens. If this doesn’t make sense to you right now, I will share a little of my experience and how it has brought me to where I am today, at the beginning of my cane training adventure.
Let’s talk about a legally blind person living as if they were sighted. Sounds ridiculous, doesn’t it? I bet lots of people do it yet nobody seems to talk about it. I did it. If I hadn’t, my cane wielding adventures may have begun a long time before now.
The difference between coping and faking it
There is a fine line, but a huge difference between coping and faking it in terms of a visually impaired person appearing to function as a sighted person. The distinction is important because ‘coping’ is the ability to manage daily activities and is the key to living a full and rich life, despite having a visual impairment. However, ‘faking it’ is simply appearing to manage. They look the same on the outside, but feel very different on the inside. Up until my mid twenties, I would usually find myself in situations where I could see sufficiently to manage what I was doing on my own. I was relaxed, confident and didn’t wonder what others thought of me. In situations where I couldn’t see well enough, I would fake it and try my best to act like I could. This would make me anxious. I was quite good at it and people couldn’t tell anything was different about me, but everything I did was a leap of faith or perhaps more appropriately, a stab in the dark! (Sorry, I love a good pun or blindness-related wordplay!) I concealed my difficulties and carried on as normal, but sometimes I would fall, knock things over or say the wrong thing. This is when faking it backfires. It’s likely that people around me didn’t think too much about it, but these incidents made me feel awkward and embarrassed. Do you see the difference? Up to a point, a person can appear to be behaving the same on the outside, but the ‘coper’ is at peace on the inside, whereas the ‘faker’ feels inner turmoil.
Why would a visually impaired person fake it?
Mostly it’s out of habit – if you’ve always ‘just got on with things’ it doesn’t cross your mind to ask for help. It feels natural to carry on and find a work-around for a task you can’t see well enough to do In the usual way. You are not consciously faking it, you really do think you can manage, but it’s not until later that you realise you could have done with a bit of support. Meanwhile, to anyone else, it just looks like you’re just getting the job done, albeit sometimes you do it in an unexpected way. They have no idea your brain has been working hard to think of solutions to the difficulties caused by a visual impairment. This might sound a lot like coping, but it can actually be making life more difficult than it has to be, without realising you’re doing it. When you can’t see, everything is harder anyway, so you might not realise there’s an easier way to do something until you ask for help- which you don’t because you believe you’re doing just fine. For example, making tea can be tricky when your vision starts to fail but we all find a way of doing it, often with a few burns and spills along the way. But if we talk to someone about it, we might discover the liquid level indicator, which makes tea-making a breeze. In that case, not seeking help or advice is faking it.
I was taught that if I couldn’t do something how everyone else does it, I can find a different way. It might take me longer and I might have to work harder, but I can do it. This philosophy worked for me and has always been my default approach.
Even as a child, I found ways to get things done. For example, I wasn’t worried that I couldn’t see the blackboard at school. I would have to remember things, take notes and sometimes, look things up later that didn’t make sense without the words and diagrams on the board. Studying took me longer than the other kids and there was always a niggling feeling that I might have missed something, but on the whole, I didn’t worry. My grades were good and I was happy. So I didn’t ask for help, and convinced everyone else that I didn’t need any. Looking back, I probably should should have had some assistance. Maybe a teaching assistant could have helped me and maybe I would have achieved better grades – but maybe I wouldn’t. And if I had had a grown-up sitting with me in every class, maybe my social experience of school would have been very different. I don’t know for sure, but because the fact that my disability would have been highlighted. I might have felt that other kids perceived me as different, which leads me to the second reason why visually impaired people fake it.
Sometimes it is through shame and embarrassment of revealing the truth – that you have a disability.
I was a happy child, surrounded by a close and loving family. Despite feeling secure, supported and loved, at times I hid my visual impairment because I didn’t want to be different. No child wants to appear different. Of course I later realised I am different, for reasons other than my blindness (for a start we were the only non-white family in a 20 mile radius!). In truth, we are all unique and have our own struggles, but try telling a teenager that! And it’s not just teenagers. People who experience sight loss as adults often feel embarrassed by it. They may avoid talking about it and can be resistant to accessing support or using a cane or a guide dog. What are the reasons for this? Shame? Vulnerability? Fear of being judged? These are the same reasons people would rather fake it than get the appropriate support to teach them to cope. Interestingly, the feelings I mentioned are all elicited by external factors – mainly other people. Of course, not everyone will judge, ridicule or take advantage of a person with a disability, in fact I‘d like to think very few would, but enough might, to make a person who is already at a disadvantage, feel that they must fake it and thereby putting themselves even more at risk.
How I realised it needed to change
Honestly? It just got a bit silly. Whereas at one stage I felt like I was coping well 90% of the time, I began to feel like I was faking it more and more frequently. Life is more work and less fun when this happens. At some point I felt tired and I realised there was definitely a better way. I don’t know when I had this epiphany exactly. It might have been whilst staring at blurry rows of pasta in the ‘international foods’ aisle, waiting for other people to leave so I could pick up each packet, one by one and bring it to my nose in order to locate the wholewheat penne (actually it was the teeny tiny pasta shells for kids – Who doesn’t love them?!). Or maybe I was standing in a nightclub surrounded by people, feeling alone. I couldn’t see who or what was next to me and the loud music prevented me from hearing what was being said, but I stubbornly insisted I was having a good time anyway. I take these examples from my university days and I think that’s when my attitude began to shift.
The other factor was more recent and the most important thing that’s ever happened in my life. We had kids. I need to keep them and myself safe and hold onto my independence for the sake of their futures as well as my own.
So, there you have it. It took a considerable amount of silliness and two tiny human beings to give me the push I needed to pick up a cane.
What I did about it
It wasn’t a big, immediate change. It was small things I’d do differently without really noticing. For example, I would just start picking up packets of pasta and holding them at the end of my nose and not care who was watching. One day I found myself asking someone to help me find the teeny tiny pasta shells – and I didn’t mind it. I stopped going to nightclubs unless it was with my closest friends who are all au fait with my disability and I actually believed I was going to have fun. Or I suggested we go somewhere else where I felt more comfortable. As the years have passed these small changes have led to bigger ones, using assistive technology, making adjustments to my home, seeking advice and now, learning to use a cane.
Why we need to talk about blind people faking it
It’s not easy sharing all this, but I think it might resonate with some of you and make you feel you’re not the only one. Or it might be thought provoking for others, perhaps enough to start a conversation and spark an interest to learn more about blindness. That’s got to be a good thing. You see, blind people do fake it – sometimes, some of us pretend to be sighted. In part at least, we do it because it’s easier emotionally, and sometimes even practically, than being open about having a disability – in our modern, first world society. It’s 2019. Video calling is commonplace, cars can drive themselves – we’re practically living in the Jetsons! Yet concealing a disability is the preferred option for so many people. Surely, we can do better?
I want my blog to be a positive place and will strive to provide upbeat and happy reading, but I felt this post was necessary by way of background. I’m not sure if I could fully share my journey to future independence without first telling you how I got to the starting line.
I also wanted to share this post for another reason. While social media shouts about accusations of visually impaired people ‘faking it’, I hope that sharing my ‘truth’ on the topic might be of help to people who have had similar experiences and that it might help other people see there is an alternative meaning of those accusations.
I would love to hear if anything I’ve talked about sounds familiar to you or someone close to you. Feel free to leave a comment or get in touch. If you follow this blog, you’ll be notified when the next part of the ‘The Cane and I’ mini-series is published, when I’ll talk about how I mentally prepared for my first cane training experience.
Thanks so much for reading, I appreciate your support, and hope you’ll check in again.