Getting it out there (but not literally). (18 minute read)

This is cane-related although it may not seem, so at first.

I will happily apologise if I’m not the first to write about this but my internet searches have come to nought. If anyone knows of a similar or equivalent article please tweet a link to @CaneAndAbleBlog. I’m going to assert that I’m maybe one of the first people to talk in depth about something that we males with visual impairments don’t really get into. We’re about to get well and truly into it now.

In one sense I was very much beaten to the punch by Henshaws and a video they posted on YouTube called “Do blind men sit down to pee?”. It’s only a little over 3 minutes out of your life and I think it would be helpful if you, dear reader, viewed it too if you haven’t already.

Please aware that what follows is not a review or critique of that video but more the end product of some thinking I’d been doing around the subject prior to seeing the video and some subsequent thoughts which the video helpfully crystallised. I’m very grateful for the fact the video exists.

Not so much because of the specific question it asks. It’s not one I’ve ever been asked and it does unfortunately smack of the sort of ableist questions which purport to arise because people are genuinely interested, but more often sound just plain old intrusive.

More that it is, as they say themselves, a starting point for putting a whole pole of related issues out there and hopefully giving them a profile they’ve not had so far. Some will be obvious. Others? Less so.

My last words on the video? The reference to “sitzpinkler” as being German for someone who sits and urinates is unfortunate. Yes, German men may indeed be taught that this is a good thing as asserted in this rather brief Guardian article but it has also been used as a pejorative term. Let me just refer you to Urban Dictionary and leave it there.

Moving on, let’s get some clarity on the original question. Wholly “blind” people make up approximately 4% of the population of visually impaired people in the UK. These figures are by their very nature approximate but I think we can take it that the video was talking about the visually impaired population at large rather than just that one segment. The answer to the question then is not a straightforward “yes”. It’s very much about personal choice; very much about the nature of your specific visual impairment and very much about your own personal experience.

There are lots of questions to unravel here though. Do some visually impaired men sit down to urinate? Absolutely? Is it because we were trained to do that or because of our VI? Well it could be either, and I honestly have no evidence either way, but I suspect that’s it’s not a trained or a talked about thing. It’s a trial and error “oh my goodness” sort of thing. Is it most of us? No idea? Do we talk about it? Ah, now there’s the rub. No, we do not.

I suspect that many men (and boys) whether born with VIs or acquiring them later just stand up at public urinals and don’t give what happens next a second thought. In view of what often happens next that may be just as well but in all seriousness it may simply not be an issue for some VIs or for those who are simply not fortunate (that doesn’t exactly feel like the right word) enough to have someone tell them that there are issues.

Ah yes, “issues”. There are several and as I’ve not seen this sort of stuff out there before let’s go for it.

So, yes, when we’re stood at urinals there are multiple issues. I’m sure younger visually impaired people are super-confident this is not a thing but sooner or later someone tells you that, actually, it really can be an issue. Just be grateful if they do it with discretion and one to one. Coming back to your seat in the pub or at the football is not the place you want to be told that there’s urine on your trousers or on your shoe(s). You’ll claim it was splash back from the overly strong cold water tap when you were washing your hands. For a while, maybe even a long while, you might even believe it. I did, for years. It may even occasionally be true, but that often? Really? In retrospect who was I really kidding?

Similarly, depending on your specific VI, there’s the whole thing of fumbling to undo, and especially refasten, trousers whilst stood up in a crowd slowly moving towards or away from the urinal and, yes, let’s admit it, often competing with subtle aggression to do so. Buttons? Bah.

Add in those VIs which involve an unusual head position. I’m fairly confident several people with specific conditions will be able to relate stories about how they learnt that the gentleman next to them didn’t take too kindly to them apparently staring at their penis. It’s not a great look and if you add alcohol into the mix, yours and/or theirs, as is often the case at public events, then it can be dangerous to boot. You might well ask, in your blissful ignorance, how hard can it be to just whip it out and aim straight. You’d be surprised. Possibly unpleasantly so. If you don’t have fully functioning three dimensional vision or you struggle with the more than occasional lack of contrast, or colour, between the urinal and the floor then what seems relatively straightforward often isn’t. The point being that you’re the very last person to know whether it has in fact been straight forward so to speak although you’ll definitely know about it if you accidentally aim towards the person next to you and (ahem) “streams” cross over. Count yourself lucky if the person is so shocked and in a rush to get out that they say nothing. That’s not a thing you want to happen twice.

Oh, and “don’t try this at home” is a phrase that applies equally here too. I expect few of us have a urinal at home (I’m vaguely disturbed by the idea anybody might) but I’m willing to bet most of us have had that lazy moment or (drunken?) moment when we’re in a rush and we decide to do what we need to standing up. That vaguely relieved/smug/euphoric feeling is soon dismissed by the next person who uses the bathroom and their willingness to either cut straight to the chase and point exactly where “most” of “it” went or their less than subtle questions about whether you knew what you’d “done” to the toilet or whether you “intended” to make the floor that wet. Let’s not forget the one about when you, the person with a VI, are going to clear it up. Its fair to say that works as well as you might expect. It’s all rather pointed and uncomfortable and so, yes, many of us have given up and simply avoid urinals, sitting down when and where we can or simply avoiding going at all if we can at all get away with it.

That brings us neatly to the question of how exactly some of us do avoid the standing issue. The answer might seem to be about just using a cubicle but it isn’t really. In the smaller toilets it’s often straightforward but as you enter you’ve no guarantee of that and, to be blunt, as any male who’s used a cubicle at a large public event can testify, one might wonder if there’s any gain in doing so when many cubicles become broken doored overspill urinals from which emerge vaguely inebriated members allegedly of the human race but sometimes not obviously so. The trail of urine; sodden toilet paper (if there’s any at all) in places you can’t quite comprehend; sodden and most probably broken toilet seats or flush; snapped off hooks and interesting holes in the wall where you might not want any… and much worse, leaves you not only with an overwhelming sense you may not be part of the same species but also something of a nightmare to navigate and use. It’s barely tolerable for someone without a VI but for the rest of us it’s unnerving and a potential deal-breaker. Now, granted this is clearly a worst case scenario but it’s also something almost all of us will have experienced at some point. Many of us will have articulated how disgusting a scene this is. I wonder how many of us will have further articulated the specific issues it also raised because of our eyes? I’ve never heard or read anyone saying so.

I carry a small man bag pretty much everywhere I go. The small number of pockets carry my wallet, concessionary travel passes; a smart phone which largely gets used for texts, calls and navigation; a monocular and a chunky battery charger and cables for the phone. If there’s no hook on the back of the door where does it go? The floor? Hmm, not when it’s in that state. I can barely bring myself to drop my trousers knowing the fate which awaits the bottom of them and the subsequent assumptions from friends and family when I emerge with trousers a slightly different colour at the bottom.

I suppose I could keep it on my shoulder whilst sat? Yes, sirree. The obvious answer. Maybe not when you realise it can sometimes still hit the floor or when you discover that what it was touching was not actually the side of the toilet but something attached to the side of the toilet.

I guess I could also just, er, stand up in the cubicle if urinating was all I needed to do. Well, yes, but don’t we already know how that ends.

This blog should issue a disclaimer at this point if this is turning your stomach or worse but, sadly, this is some of the experience of trying to use toilets instead of urinals when you have a VI. It’s not the whole. Often it is absolutely painless but it is definitely some of the experience. Sometimes they’re clean, well lit, reasonably large, well-stocked and almost a pleasure to use. The problem is that the frequency with which that is actually the case is surprisingly low when you have a life reliant on public transport and enjoy things that inevitably take you to a wide range of public venues of all shapes, sizes and inept signage.

Ah, yes. Signage. Once you’re familiar with a place then the lack of signage or the bizarre attempts at signage largely cease to matter. It’s still possible to find yourselves in the ladies before you know what’s happening but worse things (see above) can happen. Signage in an unfamiliar place is often some kind of test. First you can see it then you can’t. Then it appears to be taking you somewhere the toilet isn’t. Then all signage disappears, Then you ask for help and someone unintentionally makes it sound so obvious, and it often is, that you beat yourself up over having made insufficient effort before asking. Yes, somehow signage designed by people who have apparently never looked at a sign suddenly becomes your fault in your head at the very least. I am especially a fan of those places who use symbols or script which might fit in with their corporate style but which renders genders indistinguishable for someone like me. Mexican and Spanish restaurants. I don’t know why it’s a thing but it’s a thing. I’ve no idea of the thing attached to the door on the left has a penis or not. It appears to have breasts or is it just a plump person. Who knows? Not me. That’s for sure.

Don’t go looking for consistency. By and large it doesn’t exist. Theatres, railway stations, coffee shops and pubs. Basically they’re a law unto themselves and if you find a cracking example you’ll do well to find it replicated. Dare to suggest that it might be possible and you’ll be branded a trouble maker. Not that I have a problem with the latter concept.

I might want to sit down. I might want a cubicle. Nobody wants to make it easy. I’ve not even covered large toilets yet, You know the ones you occasionally find at service stations or large shopping centres. Maybe 10 or more cubicles in a row all the same colour (usually white) with 1 purporting to be an accessible toilet just by or inside the entrance it which is inevitably populated by a Dad she lad doing what they do with the door half open. Someone decides that the queue for these should be long and the front should be just inside the entrance at the end of the cubicles. I’ve no idea how this strange cult of the end of cubicle queue started but it doesn’t really work for visual impairment. Even when I’m finally at the front of the queue I’m not quite sure which door just opened and let that bloke out who’s now struggling to get past me and the badly positioned queue. The British are allegedly excellent at queuing. Er no, only when kettled or shoved.

Anyway, said bloke shoves past me and off I go with the mutters of impatience behind me that I’d not set off sooner. There’s no time to explain that this was because it takes me a tad longer to figure out whether such gents are entering or exiting cubicles but no matter. I’ve been beaten to the punch by that bloke who bypassed the queue and pretended he wanted a urinal so he could loiter with intent outside a cubicle and shoot in before the poor bloke exiting has finished the usual bizarre ritual of fastening his trousers whilst simultaneously opening a cubicle door far too early. Of course I am now inadvertently left looking like I’m the bloke who has queue jumped. As I said, different species!

What then is the solution to such conundrums? You (maybe) guessed that, in part, it’s a symbol cane. I say “in part” because the real answer is that it’s an accessible toilet. Well, it’s an accessible toilet when I’m not at home. It’s also not quite as straightforward as it seems.

Accessible toilets fall into many categories such as the ones which are poorly maintained; the ones which are inaccessibly located; poorly signed and so on. Mostly though they fall into those with an NKS (National Key Scheme) or Radar key and those without. There’s a whole other article to be written about the joys or otherwise of the Radar scheme (and maybe I’ll do just that in the near future) but the point is that it exists and gives you theoretical access to around 9,000 accessible toilets. It gives you no access at all to those toilets which purport to be accessible, available for baby changing, unisex and goodness knows what else in places like Costa Coffee where the type of toilet; the location and particularly the process for accessing vary from site to site.

I first encountered a need for an accessible toilet when a spinal issue, which originated from a sporting injury, came back to haunt me. I realised fairly quickly that the new manoeuvres I needed to use a toilet without crumpling to the floor required way more space and support than an ordinary toilet cubicle. I tried to use the sort of non-Radar accessible toilets I describe above. It’s not that I wasn’t successful. More that it was repeatedly a soul destroying, inconsistent, barrier ridden experience. Go to the toilet. Find it’s not in use but locked anyway. Go to the counter to ask for access only to find you needed to either be followed by a member of staff who would open it for you; be questioned as to why you need it (ah, the joys of invisible impairment); be given a key code that didn’t seem to work; be given a key code on a piece of paper that was so small or worn I couldn’t read it; get funny looks when you explained the latter; find that it needed a Radar key but no-one knew where it was and, best of all, the new Radar operated toilet which was locked because the key (note the use of the singular there) was “on order”. Fine if you have a key of your own. I didn’t. Enough already. A Radar key was purchased. Problem solved? Well, no.

I have lost count of the precise number of times I have been “corrected” or “explained to” by various people for either waiting outside a Radar operated toilet; joining a queue for same or when leaving said accessible space. The issue? Well you know the issue don’t you. I didn’t “look” disabled.

When I use those words in quotations you can take it that I am also referring to straight up abuse. The grandmother with 3 grandchildren who, quite understandably, didn’t see why she should pay 30p to toilet each of them but equally thought it was outrageous I should have kept them waiting because there was “nothing wrong with you”. The station security and cleaning staff who joined in to berate me. Many more examples but, occasionally, a seamless experience ensued and the penny finally dropped that I needed, to use the later words of a colleague with no vision, “… to make the invisible visible”. You can find more on the rest of that journey to enlightenment with my article on “The triggers for the arrival of my symbol cane.” This remember was at the time nothing to do with my VI. This was all about my spine. However bad that was I did not, and hopefully never will, have a need for crutches or similar support. Indeed the spinal issue began to recede after 2 really bad months long episodes where I ultimately ended up on painkillers 24 hours a day. It’s still there and it will eventually get much worse but I am at least back to where my VI is the main issue.

Whilst using accessible toilets for the first time, about 5 years ago, for the spinal issue, I was also processing lots of stuff for the first time about my VI (a late diagnosis of a new condition you’ve had along can do this). This involved the realisation that actually, whilst I could theoretically use a urinal with no difficulty in my head, I had spent my whole life to that point trying to actively avoid doing so and trying to pretend that wasn’t the case because I knew that actually it was a problem. Fairly repressed stuff and exactly why I wanted to pick up on the video and write about the whole issue of males, visual impairment and using a toilet.

My accessible toilet experiences before and after my symbol cane are clearly different. They are only my experiences. Your mileage may vary. Your experience as a male with a visual impairment may be completely different but for me the difference was night and day. There was a certain amount of self-imposed guilt involved in my decision to carry on using accessible toilets because of my VI once the spinal thing had receded but that’s long gone. Literally no-one has asked me why I need an accessible toilet (even when I suspect it’s not even occurred to them as to why) and people have gone out of their way to assist me in finding and using the things. It’s amazing what a little visibility can do.

There have been “incidents”. Life with a cane is full of such things. I quite liked the cleaner at my local main line railway station who saw the cane and I heading towards a Radar key operated toilet and, instead of just stepping aside, tried to steal ahead of me in order to open the door for me. Proceeded like a character in a cartoon creeping on tip toes and crouched down as though somehow I wouldn’t notice how the door came to be open before I got there and he could sneak away unseen having done his good deed for the day. Inevitably I was so mesmerised by this weird performance I stumbled into his bucket.

Then there was one of the first occasions I used an accessible toilet purely because of my VI and the need to sit down; take my time; not make a mess and not collide with stuff. Sure enough someone managed to break down the door and bend my cane beyond repair, which was resting against the wall near said door, before they realised there was an occupant and beat a hasty retreat. For some reason upon my exit they thought this was tremendously funny. Not even an apology or offer of reparation after I pointed out the damage.

Back on topic, it’s been fascinating to see how “… making the invisible visible” has worked in practice. It’s a fine example of the protection my symbol cane affords and there’s an extra confidence which comes with that when travelling. I may struggle to locate the gents. I can almost always locate an accessible toilet. It is perhaps the fact I’m now so much more relaxed about using an accessible toilet that has enabled me to talk about the whole using a toilet with a visual impairment thing.

I don’t need to worry whether I’m entering the ladies; the gents or a storage cupboard. I can sit down to pee and go at my own pace in order to minimise the chances of the issues I’ve described arising and when I’m going in or out nobody questions my right to do so. Indeed, at the sight of a cane they’ll often actively retreat having confused it with a navigation cane and concluded they’re about to get thwacked.

So yeah, some of us do sit down to pee but there’s a little bit more to it than that. If you’ve got this far you’ll know that already.

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The triggers for the arrival of my symbol cane. (8 minute read)

I just wanted to get this out there in some form to begin with.

I never thought of myself as a potential user of any type of cane at any point in my life until late 2016. Whilst I had a reasonable but vague idea of the types of cane out there I mostly still thought of long navigation canes in the way the rest of the population appears to i.e. canes are for navigation and for using by people with much less vision than myself. A couple of things changed this, if not overnight, then in just about six months.

Firstly, I had a collision with an inanimate object which put me in A&E for the day. They circumstances are worth describing, if only for the comedy, but also to illustrate that the issue with visual impairment is that it can bite when you least expect it.

I was heading to the post office near my workplace in October 2016 when I collided with a large metal sign embedded in the pavement with two eight foot or higher thick metal posts. When I say “large metal sign” I mean it was about five feet off the ground and at least double that going across. It signed people leaving my workplace to various other buildings and it had been there a number of years, as had I.

Let’s be very clear about this. I did not collide with it because I didn’t know it was there or hadn’t seen it. I collided with it because I wear a peaked cap to minimise direct light in my eyes and in the low Autumn sun it was momentarily insufficient protection. I dipped my head slightly lower than normal; inadvertently veered just slightly off direction so that “walking past the big sign” became “colliding with the big sign in a manner reminiscent of a cartoon character bouncing off a wall”. A colleague nearby was having a crafty fag. At the time I was somewhat surprised they didn’t enquire as to either what just happened or my actual health but in retrospect I can see that the lack of blood and the metallic “boing” noise might have been sufficiently surreal to persuade them they’d just imagined it. I could barely believe it had happened myself. Some of the impact was taken by the peak on my cap but not an awful lot. The noise actually triggered some mild tinnitus. I do already have mild tinnitus. My perception of it comes and goes. It very much came at that moment.

I somehow made it to the post office and back but, in the first indication of something being wrong, decided to use my phone camera to get a photograph of the sign I’d hit for comedy value. It took me two goes to find the sign! I have a vague recall someone asked if I needed help. I’ve no idea who or what I said in response but I think I clearly did.

The next indication of something being wrong came fairly quickly. I decided to take the lift up to my work floor rather than walk upstairs as I usually would, and got off one floor higher than intended. Suffice to say that my thinking at the time was that the lift buttons had floor numbers so if I was concussed in any way that would surely help. Do I need to add that every floor is labelled with a floor number at least fifty times bigger than the lift buttons? A bang on the head can do quite a lot of very quick damage to supposedly logical thinking. It’s a lesson I have carried forward.

It took me two hours at my desk alternating between silence and garbled crap to be able to finally tell the person behind me that I thought I had a problem. Remarkably, the following week I came across the work I’d done in that time and it, despite having no recall of it at all, it was perfect.

I was escorted downstairs via the same lift; insisted I was shaken but didn’t need to link arms and then promptly veered off and collided with those irritating sensor controlled glass doors which never quite slide open enough for you to get through without slowing down. Yes, I was clearly in control! Anyways, I think you get the picture by now. Taken home; advised by the non-emergency number to get to hospital and many hours of waiting later finally getting myself through a thorough set of neuro tests which confirmed that, yes, I did have a brain but it was in shock rather than concussed.

I am happy to go on record and say that if that was shock then I don’t want concussion thank you very much. In retrospect, “shock” really was exactly that and I can see now that I was quite shaky and shaken for quite a few weeks afterwards.

Relaying this story the next week to work colleagues one of them quietly suggested that what I needed was a symbol cane as it would give me at least some warning as to what was about to potentially happen next. I can’t honestly remember my exact reaction but I think I was fairly dismissive. Not because I disliked the concept of a cane but more that I couldn’t immediately see what it would offer me in terms of both collision protection or anything else. The attempt to further sell me the idea by telling me I could “bling” a cane in order to somehow personalise it was not a winning strategy. If you already feel vulnerable then why would personalising an object you initially treat as having the potential to make you more vulnerable be a good idea?

However, the thought stuck with me as did the suggestion from the same person that I should talk it through with an Occupational Therapist work colleague.

The OT conversation took place a few days later and planted me even more firmly against a “blinged” cane but got me into a discussion about types, cost and purposes which I didn’t see coming but which started to push a tiny seed more firmly into the ground. I didn’t admit it then but I could sort of begin to see me with one of the shorter symbol canes.

The second thing which happened to me was equally random. I happened to be getting an earlier bus than usual to go do something eyes related. I ended up accidentally sat in a priority seat next to someone with a lovely but lively guide dog. They were clearly travelling as far as me but no conversation took place initially as they were preoccupied fending off endless comments and conversations from well meaning but, I would guess, somewhat wearisome strangers about the dog.

I’m not a “talk to random strangers on a bus” kind of guy but I noticed that said stranger also had a symbol cane with them. Aha. As much of the bus exited in the city centre I plucked up the courage to start a conversation by commenting on the fact that so many people commented on and patted a working dog and how weird it was that so many people didn’t realise the dog was working. This drifted (well, rather specifically drifted) into a conversation about how people used the dog stuff to perhaps avoid the slightly more awkward conversation about eyes and then off we went into talking everything eyes. By journeys end I realised I was not only talking with someone with a dog and cane but also to a trainee Eye Clinic Liaison Officer (ECLO). As bouts of good fortune go this was right up there. Contact details were exchanged. You have to realise that being bad at eye contact and reading body language don’t naturally lend themselves to being a great networker so, for me, this was extraordinary behaviour.

Off I went buzzing with the much new information on the value of symbol canes and two specific nuggets of information which were to prove decisive in the weeks to come as I became much more engaged in the thought that I maybe needed to at least try one.

The two vital facts about symbol canes that I’ve yet to see fully or simply articulated elsewhere? They can slow you down, and… they act as a protection. Small words, but fascinatingly huge once you get to grips with their meaning.

I’ll write on some other occasion about the confusion caused by not only not “looking” visually impaired but also daring to race around at speed because, guess what, there’s nothing wrong with my legs. I’ll also write at some point about the joys of being unexpectedly on the wrong end of hate in connection with my vision but, for now, just accept that being made to slow down or at least exercise some caution because you’re carrying a long but puny white cane is, after you’ve shocked yourself by walking into a near unmissable large sign, a good thing.

It’s also fair to say that one of the barriers to being a cane user is persuading both yourself and your nearest and dearest that it will not make you even more of a target. Being able to assert to both those parties that other users with less vision and potentially more vulnerability than yourself are absolutely clear in their assertions that it’s nothing but a protection at least gives you one less way to talk yourself out of a trial purchase. It doesn’t go a long way to persuading others that it is a protection but it at least starts the dialogue.

So, on Sunday the 9th of March 2017, around six months after colliding with an object so large I can still look at it and not quite imagine how I walked straight into it, I quietly placed an online order for my first 34″ (85cm) symbol cane. I’d like to thank both the work colleagues who started me off on this path as well as that random stranger who inadvertently used the most powerful word you’ll ever hear in connection with a symbol cane – protection. You’ve probably no idea what you started.

Why “Cane And Able”? (1 minute read)

Oh come on. Really? Well okay then.

Welcome to the rather odd world of the symbol cane. The experience of being a symbol cane user is pretty new to me and has brought with it nothing but interesting experiences both good and bad.

On the one hand I am a long way from wholly blind and could never describe myself as severely sight-impaired and yet that is largely how cane users, all cane users, are perceived. On the other hand, much as there are many many ways in which I am little more than a person who wears spectacles, there are specific circumstances where the cane is, at minimum, useful and at best a real protection. I’ll be expanding on all of these thoughts in due course but for now I hope to give at least the sense that the sight-impaired or partially-sighted fall between the cracks in discussions on visual impairment. Thus the fairly bad pun for the title of this blog.

I have not a religious bone in my body but once the name arrived fully formed in my head some time ago I’m afraid it’s stuck. No idea why, but it has. I actually really struggle with puns so part of me is appalled with the fact that I’ve gone with one but there you are. Hypocrisy is going to feature at some point in my blog posts so we may as well start as we mean to go on. All better suggestions will be welcome as soon as I get to the point it might be worth opening up comments.

And off we go… (40 second read)

Please bear with me. This is a holding post until the real stuff begins imminently. Thank you.

First page now up – “Why a blog?” A few more will follow; A Twitter account already exists @CaneAndAbleBlog. There’s nothing there yet either but the action will begin as the posts start on here. I am aiming for a minimum of one a week. We shall see.

It’s also likely that the current theme/appearance will last only until I have time to browse the many other options and find the best fit. Given my visual impairment, accessibility will be near the top of the list. As these are templates designed by other people, please appreciate that what I would like and what I get may diverge slightly.

The intent is to build slowly and steadily.