Some Musings After a Visit to the Ophthalmologist (and a weird bit about a mouse on a pencil)

 

Oh dear, I really have neglected my poor blog this year. I remember a very excited (and clueless) Michelle being convinced that she’d have so much time to devote to her blog (amongst other projects) because, I mean, how much time would this whole PhD thing actually demand? Um, turns out quite a lot actually. It’s been a very busy year with the fieldwork stage of my research, developing my academic writing and involvement in some great disability projects. But sadly at the expense of writing here. I shall try to be better.

 

In my last post here, all the way back in January (*blush*), I shared a bit about the state of my sight and yesterday I went to the ophthalmologist for the first time in over ten years. I mostly went to get SARS forms sorted and to get an updated proof of disability letter (because apparently legal blindness does run the risk of not being a permanent condition, okay) but thought it would be a good opportunity to get the old retina checked out too.

 

When I was little going to the ophthalmologist felt like an epic road trip even though it was only a drive to Somerset West. In my head it was the same caliber of annual road trip as the one we made to see my grandparents in McGregor just before Christmas. There were snacks packed for me and my brother (who often had to tag along) or sometimes (great excitement) lunch out either before or after the visit. I didn’t mind going to the “eye doctor” even though at times it could be a bit baffling, what with all the crazy devices and lights. The only thing that really freaked me out was having my pupils dilated with drops and the blue fog this left me in for a while. I remember having my visual field tested by having to say when I could see a little, fluffy mouse on a pencil (um, not a real one…I mean a real pencil, not a real mouse impaled on a pencil…that took a dark turn…a mouse employed to cling to the end of a pencil…that’s better…) being moved from the periphery into the centre of my vision and, of course, the obligatory Snellen Test.

 

The Snellen Test (or whatever they’re using nowadays) is a funny old thing for those of us with severe visual impairment. It can be very anxiety provoking. As a child I knew, even though no one had ever explicitly said so, that what would make the adults happy was if I could see. Of course people want you to see, especially your terrified parents, they imagine how difficult your life is going to be if you can’t. There’s also a little twinge of shame (very hard to describe) that comes when one is not able to recite fluidly the letters on the chart despite the fact that everyone in the room (including you) knows that you’ll only be able to see the first (maybe the second) row. It’s quite easy to become familiar with an eye chart, either on purpose or just from regular testing. For me it was the latter. I remember saying to my doctor, “It’s W X but I don’t know if I can see it or if I just know it”. I know for others though that learning the eye chart was a defense mechanism against embarrassment especially when eyes were being tested in a group setting such as a visit from the school nurse. There’s also a strange need to preserve the feelings of the person administering the test. Again, this is hard to explain, but, even as a young child, I just didn’t want them to feel bad. Many years ago I was getting new glasses (these were hugely magnified lenses I wore when reading and writing, in conjunction with a hand-held magnifier,  that an optometrist cleverly shaped to fit regular frames) and for some reason a new lady at the practice, unfamiliar with my case, insisted on me doing an eye test even though me and my father told her this was unnecessary as we just needed a repeat of my usual lenses. Needless to say I couldn’t read any of the chart with the left eye and only the first giant “E” with the right. I also told her that as I knew it was an E anyway that definitely helped my ability to “see” it. She was completely flustered and sort of said, “Yes, I see, your eyes are quite bad then?” The dominant feeling I was left with, over riding my irritation at not being listened to and the usual shame-twinge of failing at the eye chart, was sympathy for the lady in question as she grappled noticeably with what on earth to do with me. I just felt bad that I’d made her so uncomfortable by my inability to see.

 

I think one of the most tense questions to be asked as a person, and especially as a child, with vision loss is, “Can you see that?” I remember being tested for a magnifying glass and having to say, “No” quite a lot in response to, “Can you see that?” Before the right strength was found. Again, that strange shame of not being able to see and knowing how badly everyone (especially the seller of the assistive device) wants you to. I had a similar experience more recently when a company asked me if I would like to try out a very fancy piece of assistive tech of which they were obviously very proud. I felt transported back in time as I answered, “No” and “Still no” as the magnification was adjusted and finally, yes, I could read the text before me albeit painstakingly slowly and with the discomfort of a bulky device that made me look like RoboCop (not a good look for me, you’ll be surprised to learn). I was, to be quite frank, underwhelmed, especially given the speed at which I am able to read and write with text to speech software, but the sellers of this device seemed so pleased with my slow and stilted reading, determined that I must see, that reading with one’s eyes was the first prize and, to be fair, I’m sure it is for some (probably many) low vision people. What made me feel uncomfortable about this experience was how my adaptation to my sight loss, my ability to work efficiently with the tools I prefer, was disregarded by professionals who seemed totally invested in sight (or some form of sight) as the best option for me. I felt like I was expected to have a miraculous, “Wow!” Moment (especially when they asked me to look at my mom through the device) and, under that pressure, I just told them what they wanted to hear when, in fact, I saw no notable improvement. I think, and I’ve said this here before, there is often a real sense of panic and sorrow in sighted people encountering the blindness of someone else. This places those of us actually experiencing the sight loss in a position where we feel we have to manage the emotions of others, often professionals, in relation to our disability.

 

I spoke to a friend recently about how she felt she had to tell and show her eye specialist that she was okay, that her life was not one long, endless suffering, that she was happy, successful and fulfilled. As if she was saying, “It’s okay that you couldn’t fix this one, don’t worry about it, I’m fine, really, I’m fine”. I can only imagine how hard it must be for a health professional to have to say, “I’m sorry, there’s nothing I can do” and I realised yesterday as I chatted to my ophthalmologist (who has been my doctor since I was four) how much he has to manage the hopes of the people who come to him for answers about conditions that are often just not treatable. Of course people want to see. Losing your vision is hard, it’s a real loss for you and the people who love you. Many of the posts here share how difficult my own adaptation to sight loss was (and continues to be).

 

I’m not sure if it is the difficulty of this journey that has made me quite resistant to the idea of cure or any kind of sight-restoring intervention, because I am. I guess I feel a bit like, “I’ve worked so hard to weave this thing into my identity and now I don’t know who I’d be without it”. I get very uncomfortable when talk of medical advancements or experimental treatments arises. Of course, I have one of the most researched conditions so that helps. I get very cringey when there is some feature in the media about some new medical breakthrough and me and my parents get messages to, “turn on the T.V. now” or newspaper clippings or tagged on social media. I know these things often come from a place of genuine care and concern and I also know that there are many visually impaired people who follow this kind of news closely and with great interest, but I can’t seem to muster the same kind of investment. For me these news items feel almost like a threat to my Michelle-ness and in the face of this I feel that I must assure everyone that, “I’m fine though, really”. And, again, this is also about managing emotional responses to the reality of sight loss, the sympathy of the (mostly) randoms handing over the newspaper cuttings and the hope and disappointment of the people who love you and, if I’m very honest, your own mixed up feelings about disability as well.

 

What was great for me as I chatted to my doctor this week was that he recognised my adaptation to blindness as really important, just as important as any intervention he could offer me. Turns out I’m a candidate for cataract surgery (yes, those little buggers have done some serious growing over the last ten years apparently) but if my adaptation to sight loss means that I don’t find their symptoms (extremely blurry vision and ‘eye floaters’) distressing or a major hinderance to doing my life at this point then I feel I’m not going to put myself through the bother, and that decision was totally respected by my doctor. I realised through the visit how far me and my family have come in the past decade. The last time I saw this doctor was pre-guide dog, pre-any kind of assistive tech (I was reading a gigantic Politics textbook with a magnifier and almost crying from the pain in my neck and shoulders, not nice), pre-any sort of comfort with the word “blind” and pre-developing my own disability standpoint. What the doctor said as I got ready to leave was, “You’ve got a hell of a handle on this thing” and, while that’s definitely not true all of the time and has nothing to do with any amazing thing I did within myself and everything to do with the people in my life who do this with me, it was good to realise that we have come some way along.

So, How Are Your Eyes?

Recently I bumped into (no, not literally, thank you, yes very funny) someone who I haven’t seen in a while (again, yes, hilarious). Not a close friend or even someone I’d say I know particularly well but, nonetheless I was pleased to see them (stop it now). After the preliminary “how are you” enquiries he asked, with no apparent discomfort, “So, how are your eyes?”

I could feel the awkwardness creep through the rest of the room and, honestly, I was also taken aback for a moment but, in my case anyway, pleasantly so. I thought this was a lovely, kind and thoughtful thing to ask and something I don’t get asked very often. I know my parents get asked this from time to time when they meet up with people they knew around the time I was diagnosed with RP, “How are Michelle’s eyes?” But I can’t think of many times in my adult life that I have been directly asked how my vision is, whether it’s the same as it was a few years ago and how things have changed.

So I thought, with my first blog post for the year, I’d answer that question. You know, just in case you’ve been wondering but not felt able to ask.

So, how are my eyes?

Print (Reading and Writing)

For me, how I’m interacting with printed text (both reading it and writing it) has been an indicator of my sight degenerating over the years. I read my last full book in 2009 but still used a magnifying glass to read short items of text. This meant I could still read labels, price-tags, till-slips, board game cards (like 30 seconds) and recipes. But about four years ago my eyes became too weak to use the magnifier. This pretty much signaled the end of my ability to read hardcopy printed text.

Not surprisingly, I found this a bit overwhelming and I had to adapt almost overnight to all the little frustrations of not being able to read. Not being able to read books anymore was not a major source of sorrow for me, in fact, deciding to stop putting my eyes, neck and back under the pressure of reading was a relief. Audio books and computer software filled the gap for me easily and I trundled along just fine. But, losing the ability to read the little things was incredibly annoying! Having to ask someone to check the labels on my two types of moisturizer and then make sure to keep them stored in a particular way so that I don’t get them mixed up is annoying! There are a hundred little examples like this.

What I did realize recently though is that I don’t think I actually told many people that this was going on. The sight of me with my magnifier (often much sell-o-taped from its various collisions with the floor) in its little leather pouch was a familiar one to friends and family and some people did ask me why it was no longer making a regular appearance. But I never made a general announcement that it wasn’t working for me anymore. So this is the rather delayed announcement – magnifier days are over, Sherlock has left the building.

 

I stopped writing somewhere between 2010 and 2011. For a while before that I was having to write with a thick black permanent marker and this was just getting ridiculous. I didn’t miss it much although it does sometimes strike me as odd that I don’t write. For a brief time, when I was working, I had access to a large screen magnifier in my office. This was great for writing, especially signing documents, filling in forms etc. For the first time in years I was keeping a hand written to-do-list and enjoying the satisfaction of vigorously crossing things off it. I considered asking to buy it off the organisation when I left but it really was a bulky dinosaur and I would never have found a convenient place for it. Besides, again, tech fills the gap nicely.

Tech Things

 Speaking of tech. Last year, for the first time, I began to use, what I call, and a completely non-visual computer. That is, I use a MAC with voice-over which means I’m not interacting visually with the screen at all. I was quite nervous about taking this step but it’s actually been mostly pretty easy and great for my eyes not to have to squint and strain anymore. I do still sometimes use magnification software (on the desktop computer I use at Uni) but I rely heavily on the additional text-to-speech software as the magnification is so high that I can only see a few words on the screen at a time.

As I’ve mentioned here before, I’m not a huge techy person but I do love my phone and my laptop and can get along with most tasks using a combination of the two.

Getting Around

 Seriously, I cannot believe I used to walk around UCT campus without any assistance. I really don’t know how I did it. I alluded to this in my previous post about freedom of movement, the fact that I don’t get around as easily as I used to. Part of me wonders how much of this has to do with my letting go of the fierce resistance to mobility aids and beginning to rely more on them and less on my “sighted performance” coping strategies. This was certainly part of my reluctance to use mobility aids in the first place, that they would somehow rob me of my sight. I don’t know, maybe they have in a way. But, as I walk around campus with Panda the dog, I remember the stress and anxiety of negotiating the stairs and the obstacles and the people alone. All in all, this is preferable.

I think my field of vision has significantly narrowed over the past five years or so. Even in my own home I think I do a fair bit more bashing into things than I used to. I also get very fuzzy vision from time to time. This is like a film which comes over my eyes, similar to looking through a dirty window. I’ve had the privilege of getting to know someone who is thirty years my senior with the exact genetic strain of RP as I have and he has been very open to chat with me about what he can see. He told me that when he was around my age his eyes behaved similarly. He described it as an old-fashioned television losing signal slightly, the picture becoming a bit wibbly and then snapping back to again.

This sounds more distressing than I actually find it. If anything, I find these moments (reasonably frequent as they are) irritating, like I want to wipe the lenses of glasses I’m not actually wearing.

So, that’s the update.

Also, a quick thank you to everyone who reads these posts, sends nice comments and shares them. I really do hope that they are helpful, encouraging and entertaining. When I started writing them I didn’t imagine many people would take the time to read them so thanks for sticking around.

 

On Blindness and the Freedom to Move

The evening service at my church is over. I’m sitting in the front row of seats and waiting for my lift to come and fetch me. I can hear people moving around, chatting, getting coffee. The frustrating thing, I muse to myself, is that I probably know a lot of people here. I take my phone out of my bag and pretend to be doing something useful. Because the buzz of chatter is quite loud, I can’t actually hear anything my phone is telling me but that’s okay, I just need to appear occupied for the next five minutes or so. I’m paralysed, I realise. Not in the real sense obviously, I can move after all. And yet, I can’t move. Not in this kind of situation. Not even in this building I’ve known for almost my whole life. Not with the moving bodies, and the noise and the fuzzy film over my eyes (as familiar as this is becoming). No, I’d look all groping and strange. Also, even if I did get up, what would I do. Just loiter about until someone asks what I need, which is nothing really, right now. No, better to just stay put and wait for my dad to come in and get me. I’m an introvert and quite happy to sit alone in a crowd but I do worry that I appear disconnected or like I don’t want to connect. That’s why I’ve reached for my phone, I guess, like a lifeline, even though I’m not connecting there either.

The phrase, “Lunch and Networking” makes me feel sick to my stomach. I can stress about “Lunch and Networking” for days before it actually takes place and when it does I can invariably be found sitting in my seminar chair, eating the muesli bar I packed in so that I don’t faint and attempting to seem important by scrolling through my emails (which are generally from Clicks). I just feel stuck. I can’t scan the room for the people I want to meet, I don’t know what the people I want to meet look like in the first place. I can’t assess where a gap might be for me to join a conversation. I can’t find the lunch. Once, at a conference, when I asked (in a loud voice) if anyone would mind helping me to get some lunch, I was greeted with silence. I probably made things worse by making cricket sounds and saying, “Okay, guess not then”, but still, this is not a strategy I’ve ever employed again. I don’t need the lunch though. I can survive a day or two or three without lunch. It’s the frustration of feeling like I’m missing out on useful connections or, you know, the whole, “Put yourself out there, no one is going to build your career for you!” thing.

As I sit and wait, I wonder if my guide dog would make much of a difference here. I don’t have her with me because I sing in the worship team and it’s an awkwardly organised space (it just wouldn’t be comfortable for either of us). During “Lunch and Networking” she helps by guiding me to the toilet (where I can easily kill at least five minutes) and by needing to be taken out to the toilet (another few minutes down) but that’s it really. She can’t find the speaker I want to talk to or read the little name tags saying where everyone works or, yes, find the ever elusive lunch. Sometimes she’ll draw people into a conversation with me but that conversation is usually about her. She could help me get up now and walk outside to wait there but she doesn’t help me to move in that seamless way I imagine sighted people do. Weaving through the crowd, catching someone’s eye and greeting them soundlessly. I think a lot of sighted people assume that a guide dog fills all the gaps caused by blindness. As if my dog allows me to go wherever I want at any time. Maybe for the very intrepid this might be the case but it’s certainly not for me. I would not consider, for example, going shopping without someone to assist me. This means that I have to be quite organised. Running out of shampoo is a mission and not a quick stop into the shops. Sure, I do often go on a spontaneous walk around the neighbourhood but I can’t decide on a whim that I’d like a walk in Kirstenbosch gardens or on the beach. Actually, this kind of freedom seems to me to be the ultimate luxury.

I don’t think many people equate blindness with the inability to move. Again, I have strong legs and responsive muscles. Sure, I can’t drive and that’s a barrier to movement which can be frustrating. But its more. Its not being able to swoop in to pick up and patch up your friend’s kid when they fall down, its needing someone to help you to the bathroom, its navigating a busy theatre foyer in an absurd chain of blind people being led by the one sighted friend in the group. I’m always a bit sheepish about this last one. On the one hand, I feel like so what if everyone’s staring at us, screw them. On the other, I feel like a special school kid on an outing.

I guess I just feel like I’m always subject to other people’s agendas and timelines and that’s okay, I’m super grateful for the people in my life who assist me, lift me, walk with me to the loo. But quite a bit of my day-to-day has to be negotiated which is something I think most unencumbered humans don’t really get. I flew to Johannesburg earlier this year for work. When we landed I was desperate for the loo and knew I couldn’t wait the forty-five minutes or so before getting to the meeting venue. Being an assisted flyer I had to wait for the aircraft to empty. I hoped for a female “meet-and-assist” person to come and collect me but, alas, it was a man. I said, “Sorry, would you mind helping me to the bathroom?” There was a long silence before he said, “Um, you do know I’m a man, right?” I said that, yes I was aware and he just had to help me to the door and I could get on with the rest. He literally sighed with relief. This isn’t a very remarkable story but it is an example of the sort of situation I get myself into because I can’t just walk myself to the bathroom.

Perhaps I’d be better off if I was more confident, less socially awkward and less concerned about what people think of me. I probably would be. I’d probably get more lunch at conferences. But it’s just not in my personality to stand up and yell, “Who’s there!”, “Hello, can someone assist me!” I’d rather just hang around looking vague until, hopefully, someone comes up to me and asks if I need anything. If they don’t, well, that’s okay, I have a muesli bar. I’ve mastered this sort of nonchalant, wifty-wafty expression that says, “Oh, don’t mind me, I’m just contemplating life in a contented way, carry on, oh yes, let me check my important emails from Clicks”. I also wonder how much of the person I am has been shaped by my lack of ability to move, to be assertive, to take action. Is there a confident Michelle (one who puts her hand up during question time, one who mingles and flows effortlessly around a bustling room, one who is the first to jump in to help instead of feeling helpless on the side-lines) who has never been able to emerge?

I wasn’t sure if I was going to publish this post. I didn’t want it to come off as, “Oh, woe is me”. But then I read a post on Facebook from a blind person experiencing the frustration of not having freedom of movement and I was encouraged to remember that I didn’t just make this all up, it’s real and it’s hard and it’s okay to say so.

Telling the Truth

A few months ago I went to a small dinner party hosted by a good friend. I arrived and thought I did a pretty good job of greeting the other guests. I know my friend’s flat well and avoided the awkward pole in the middle of the floor with relative ease. Barring a brief moment where I nearly sat on the lap of an unexpected guy, I was pretty pleased with my general presentation. Except for the fact that one of the guests was someone I had met previously, in fact, he’d attended an event at my home some weeks before, and I completely ignored him and acted as though we’d never met because, according to me, we hadn’t.

 

This kind of social mishap is pretty commonplace in my life. A missed handshake, walking into a door left ajar, introducing myself to someone I’ve already met or almost sitting on a stranger’s lap – all of this atypical behaviour needs explaining. Why? Well, I suppose because people are simply not expecting to encounter my strange “almost blindness”, or any blindness for that matter, at a social gathering. I spend a fair amount of time with other blind people and this makes it easy to forget that we are a minority. I also spend a fair amount of time with people who know me well and this makes it easy to forget that I embody difference. Add to this the fact that this difference is not an upfront sort of difference but one which refuses to be neatly categorised with a “one glance summary”, and I’ve left some pretty puzzled people in my wake. I know I don’t look like blindness and I have so much baggage around performing sight that I almost can’t help myself. I recently did a presentation on my current research and while I was speaking I was keenly aware that I kept glancing over my shoulder as if reading off my slides. I kept telling myself to stop it realising that it was confusing behaviour for the people watching me, but I just couldn’t seem to stop performing sight in this way.

 

If you have read any of the posts here you will know that I spent the first part of my life pretty much committed to the performance of ‘not blindness’. This left me trundling around UCT campus semi-hunched over, sometimes bleeding from my latest attempt to walk through a cement bollard and trying to pass off my not seeing as a pre-occupation with the mysteries of life. As I’ve mentioned here before, this led to some very awkward encounters usually involving an embarrassing exchange ultimately outing my disability. Once the truth of my situation was explained people would often tell me how they had perceived me before knowing that I was blind: “Oh, you can’t see!? Oh my gosh, I thought you really didn’t like me! Every time I greet you on campus you just look right through me”

 

As someone who is generally quite friendly, open to meeting new people and, well, nice (I hope) it is awful to realise you’re being experienced as rude, cold, a snob or a downright bitch. But with no explanation of my socially unacceptable behaviour, these appear to be the plausible answers to the question, “What the hell is wrong with that woman?” We’re all involved in making sense of each other all the time and when an explanation about my visual impairment is not forthcoming, people will make sense of me using what they know about women, whiteness, women who hold hands with other women and the general rules which govern “normal” interactions. I have been interpreted as rude, drunk, racist, germophobic to the point where I won’t touch other people, lesbian and just plain odd. While some of these mis-readings don’t upset me (I don’t identify as a lesbian but if you want to gawp at me and my friend walking hand in hand to the bathroom that’s fine), some of them really do – especially those which cause me to be viewed as someone who doesn’t like, value or respect other people.

 

When I was about seventeen I was at a party with my boyfriend. It was dark and I didn’t know anyone there. This girl came up to me and introduced herself. I said, “Hi”. I was unsure whether I was looking at her and I was feeling anxious about that and actually about just being there in the first place. Then the moment got weird and I was suddenly aware that I had missed a cue, I guessed probably a handshake. I knew I had to explain myself but words stuck in my throat. I just could not account for myself. And, really, that is what we’re all having to do a lot of the time, account for ourselves. Meet people, network, answer questions like, “What do you do?” or “What do you think?” in short, make a good impression and follow the rules. I felt really bad about the moment at that party for a long time mostly because I knew, as a result of my inability to tell the truth about blindness, that I had been labelled as a stand-offish person.

 

Back then, it really was an inability to be truthful about blindness. I had no vocabulary and no idea how to identify as disabled and, of course, no desire to identify as such either. Today, even though I am willing and able to tell the truth about blindness, I still struggle to know how. When I’m marked with a cane or a dog then this is reasonably straightforward. It’s easy to introduce myself in a formal environment (conference, meeting, class, seminar) with my dog next to me, “I’m Michelle, I represent blah organisation, this is my guide dog, Panda, I’m blind”. It’s those social settings where I don’t have any markers (because I don’t need or want them all the time) which are tricky to manage. It just feels weird to say, “Hi, I’m blind just by the way”. But that dinner party a few weeks ago really got me thinking that I might have to start doing this to help people make sense of me. A friend was recently telling me about the group of friends she hangs out with, many of whom are transgendered, and how they provide the new people they meet with their preferred pronoun. As simple as, “I’m she”. I can really relate to this and feel an increasing need to make myself known upfront. I guess the reluctance which I feel is connected to the baggage which compelled me to fake looking at those slides the other day and also uncertainty about how to actually provide the disclaimer (because that is what it is) in a way that is not awkward. It feels like a “rock and a hard place” situation – it’s awkward if you do and awkward if you don’t. Another predicament to ponder.

Saluting My Teaching Assistants

My first year of primary school was, to put it mildly, not so great. And yet, for all that it was one of the worst years of my life (and probably more terrible for my parents than I could ever have known at the time) I’m glad I experienced it. The reasons for this are part of another post for another time. Briefly, for those out of the know, my first six months of first grade were spent at a mainstream primary school not far from our home where I baffled teachers by being a “blind but not blind” kid and, as a result, was mostly ignored. Not to drag the mood down too much, I still remember the “let’s write nicely” song we would all sing before writing time at which point I would be removed to another room to be watched by the secretary while I messed about on a computer keyboard composing full sentences, just saying. When my folks discovered that I was being made to spend break times in a separate area to the rest of the children, our mainstream experiment came to an end. The following six months were spent at a school for the blind about an hour’s commute away. This was a tough time and, as it’s not the point of this post, I won’t go into it here. Suffice to say that this difficult, disjointed year introduced me to what it is to experience disablism and it sucked. Before the days when three-year-olds were expected to be able to do basic algebra and mostly just ran about having a lovely time, I attended a mainstream pre-school where I finger painted and ate playdough along with everyone else. But, in Grade 1, for the first time, I realised that I was different and that the world didn’t know what to do with me.

 

To shorten a much longer saga, after the blind school disaster, I was lucky to get a place at Vista Nova Primary School where I was very happy for six years. Then, with the support of excellent teachers, my parents began to explore mainstream options once more. Of course, the concern that I would simply experience the same exclusion as before was real. It was not plain sailing but in the end I was accepted at Wynberg Girls’ Junior. I started in July of 2000 and remember physically shaking with anxiety on my first day. The anxiety was slightly eased by the fact that one of the girls in my grade, Tessa, who I vaguely knew from church, had invited me to her twelfth birthday party the week before so at least I knew her and one or two others. Seventeen years later and I’m looking forward to the immense privilege of standing next to this wonderful woman as one of her bridesmaids at her wedding in October. Tessa was the first of a group of very special girls who were about to enter my life.

 

Recently, while chatting to a friend about systems of inclusive education in the UK, I came to a startling realisation. We were talking about the achievement of truly diverse classrooms made possible by the presence of government funded teaching assistants and I realised that, particularly in high school, I had a team of excellent, albeit unpaid, teaching assistants also known as my friends. While it must be said that I had some wonderful, accommodating teachers, it was my “teaching assistants” who often bridged the gap between me and the content in ways that my teachers could not.

 

I took Accounting as a Matric subject and, although never my favorite lesson, I was pretty competent at it. Throughout Grades 10 and 11 my friend, Tarryn and I developed a seamless class routine. Sitting next to each other right in front, Tarryn would read out loud as she copied notes being written up on the board by our teacher and I would copy from Tarryn’s dictation. The teacher had no objection to this and often joked that we kept her on her toes by working so quickly. We were quirky kids and so our system did involve an imaginary accounting friend, Larry and compulsory phone calls (made on a calculator) to Accounting Ltd. before note dictation could commence. Our easy going teacher would roll her eyes and sometimes remind us when we forgot to make the all-important call to Accounting Ltd. In our Matric year this teacher left and we were moved to another teacher. The first thing this woman did was to essentially remove my “teaching assistant” by seating Tarryn across the room. She did eventually concede to let us sit next to each other but absolutely forbade any talking. Now, instead of having direct access to the content (from Tarryn’s dictation to my large, round handwriting) I had to wait for Tarryn to copy the notes and then attempt to copy from her handwriting which was harder for me to decipher (nothing to do with her handwriting, everything to do with my dodgy eyes). My marks dropped by about 20%. My final Accounting result hardly matters anymore but I went from a comfortable A to scraping a B in the final exam.

 

Thankfully most of my teachers were not averse to the various systems my friends and I devised in order for me to access content, but there were those who couldn’t or wouldn’t recognise the need for these strategies. Calling them “strategies” makes it sound like we all sat down one day, in a secret bunker, with charts and tension music but I honestly don’t remember ever having a conversation about the note dictation, or diagram descriptions, or subtitle reading, or sighted guiding, or anything else. I think it just sort of happened. Despite the odd misheard word leading to some confusion (I did nearly spend my life believing that friction causes cheese rather than heat, thanks Kirstin) having things dictated and described was hugely helpful. Of course, there were a few things that I just couldn’t do and this made me probably the worst lab partner ever. I will never forget standing helplessly by as my poor friend, Romi stifled her gags over a sheep’s heart, dutifully dissecting for us both.

 

There are so many other examples of how my friends facilitated for me over the years and not just in the classroom. My friends from high school, second only to my immediate family, are the people I feel most comfortable walking with. Their methods of sighted guiding are certainly not “correct” but, in the days before mobility aids were a part of my life, they were my mobility aids. And when mobility aids did eventually come onto the scene, first the white cane swiftly followed by the Emma dog, these were the people who made me feel like I was still me. One of the first times I took Emma somewhere other than university was to a shopping mall with Tess and Robyn. We were stopped at least four times that day to have the, now commonplace, access fight. I really had not expected to encounter so much ignorance and I wasn’t used to having to demand access. But I had back up. Laughing with friends about the bizarre encounters we were having on what would otherwise have been a pretty standard shopping trip eased the embarrassment of being stopped again and again by security and shop assistants. I mean if there was ever a time to jump the friendship ship the addition of a slobbery, lunch-stealing, poop machine, drawing the wrath of mall security everywhere would probably be it.

 

So this post is a salute to my teaching assistants, facilitators, mobility aids and friends. It’s really not the job of a bunch of teenage girls to bridge the disability/education gap but you did it anyway and I love you for that. I’ve now met enough blind people, who battled through mainstream education,  to know that my experience of your friendship is truly a rare gift.

 

 

Plasters and Ponchos: a post not about blindness

As I type this I am keenly aware of my thumbs, yes my thumbs. I have been since yesterday evening at around 6:30pm when I began methodically peeling the skin off the left one, first on the side right next to the fingernail  but then moving down towards the knuckle and over onto the soft underside. I continued this incessant picking during most of the Bible study which I attend on a Wednesday evening stopping only briefly to clasp a cup of tea enjoying the dull throb of the warm porcelain against my raw skin. I concealed my hands beneath a convenient poncho which I bought a few weeks ago fancying it as ideal for wrapping up on cold, working at the laptop days. Turns out it is also well-placed to conceal illicit finger-picking as well as the fact that at the moment my body resembles that of an anaconda having just swallowed a large goat. As a final aside, the poncho has proved an excellent investment as it is the only way for a woman of my endowment to get away with not wearing a bra which the older and more incurably single I become the less inclined I feel to bother with. So yes, ponchos, a highly recommended choice for the bulgy and bra-reluctant amongst us – digression over.

By the end of the evening I had started on the right thumb as my left was bleeding. Arriving home I took a shower which involved a lot of whimpering and attempts to bring only my right hand into contact with the hot water and strong, anti-bacterial soap which I insist on using. Then I doused my hands in tissue oil and applied plasters. This morning as I sat at my little desk at the university, re-applying plasters (four in total) to my battered fingers I thought – I should write a blog post about this.

It’s no secret to my friends (and probably lots of random people) that I struggle with this rather strange compulsion. About a year ago I actually typed “why do I keep picking my fingers” into Google and found a whole lot of articles about compulsive skin picking which does have some fancy name which I’m feeling too lazy to go and look up right now. I also found a blog post by a woman who described my experience exactly. As I read her account of being completely oblivious to what she’d done to her hands until crying out in pain when washing them I said, “yes, that’s me”.

There was lots more that I related to; the embarrassment of realising that on the way to your meeting you’ve picked so badly that you’re bleeding and now you have to greet someone without shaking their hands with the bloody mess that are your fingers, even more embarrassment as you realise you’ve left a pile of your skin on your friends couch, the temptation to invent a kitchen accident when someone spots your plastered fingers and exclaims; “Oh, what happened there?” and the benefit of painted nails for reducing picking. I was quite pleased to know that I was not alone.

One thing I’ve noticed about my skin picking is that no amount of shaming, judgement, begging, bribing or chiding from others makes any difference. What was extremely helpful though was a solution suggested to me by my cousin. After she spotted the carnage of my hands a few months ago she fished around in her bag and handed me one of those hair bands that look like a ring of plastic telephone wire. This has acted as a great substitute for picking (I’m actually holding it right now in my plastered fingers). I’ve begun carrying a few of these around in my bag and wearing them on my wrist. It probably looks a bit odd when I spend a meeting twisting this plastic bracelet around my fingers (I actually broke one accidently during a meeting with my PhD supervisor – literally snapped it in two) but anything is better than leaving skin on the carpet and bleeding all over ones cream trousers.

Even with the aid of my “stress bracelets” as I call them, the lure of picking my skin is ever present and sometimes, like yesterday when I’d left my bracelet next to the keyboard at university, irresistible. Of course it’s actually not about skin picking, it’s about anxiety. The release is hard to describe. Its like picking at my fingers clears my head and helps me to focus when I’m working or speaking to people in a professional capacity. It is also indescribably comforting particularly in social situations where I can sometimes feel a bit overwhelmed. It’s not always about being “nervous” although sometimes it can be, like when I’m giving a presentation or sitting in a seminar dreading being called upon to add an opinion. But more often it’s a comfort for the odd, underlying, constant anxiety that comes with having anxiety I guess. I don’t feel that I know nearly enough about anxiety disorders to say anything terribly knowledgeable about this and I definitely feel far more comfortable writing about blindness  than I do writing about mental health issues both generally and my own so I’ll leave it there.

 

 

The ‘Slightly Smiling Face’ and Other Predicaments

I’ve said this here before – over the past few years my life has been increasingly and positively impacted by technology. I was quite techno-phobic in my younger days, the thought of having to upgrade or replace something (a phone, a laptop, an assistive device) would fill me with dread rather than excited anticipation. Even today, I wouldn’t exactly call myself a tech enthusiast. If it works, I’m happy. I’m not the type to read a bunch of articles, comparing my options before I purchase something. I’m not counting down the days to the release of the latest and best, I don’t even know what the latest and best is. I’m also not terribly fussed about blindness specific tech, either assistive tech or curative tech (such as the bionic eye for example). I don’t have a whole collection of apps for navigating around or identifying colours or whatever else there are apps for. I’m also not about to strap a network of wires to my face in order to see a bit more – but that’s just me.

 

No, it’s really the ability to connect with the world in the ways that most seeing people do that I enjoy so much. Skype on my IPhone, for example, is so much easier to use, with Voice Over, than on my laptop where I always had to ask someone to assist me at some point. Uber has quite literally changed my life and now that there is an ‘uber assist’ option in the early stage of development I suspect I’ll have an even happier time. Just being able to manage my calendar, emails and other communication easily is a source of great joy for me, especially as these were not always tasks achieved with ease in my pre-smartphone days.

 

At the same time, I know that for many visually impaired people this is all a source of deep anxiety either because the required assistive devices are out of financial reach or because, for a variety of reasons, individuals may struggle to get to grips with certain elements of particular devices or, in complete frustration, have packed an expensive, much recommended device away in the back of a cupboard. Of course, being constantly assured or, more negatively, chastised by the “tech savvy blind community” that its actually all very simple and you should really download this and install that only serves to ramp up the anxious suspicion that one is increasingly falling behind and losing touch.

 

And that’s really it – we want to be in touch. We want to be in touch with the things happening in our worlds and we want to be in touch with each other. In my life, privileged as I am to have access to a smartphone that I feel comfortable using, the ‘keeping in touch’ mostly happens through Whatsapp and Facebook. Even though most seeing people are completely perplexed by my phone yammering away at top speed, often asking me if it’s speaking English, generally I find these platforms of communication quick and easy to access. And yet there are, and will always be, certain things that I simply can’t engage with or which I struggle to interpret because these platforms are built primarily for those who are seeing, rather than for those of us who are listening.

 

I feel like there was a brief window, when we had just begun to transition from talking to each other over the phone to typing to each other over email and text message, where the seers and the listeners were on a similar page. That our assistive tech was not nearly as nifty as it is now does throw a bit of a spanner into the works of this argument but just go with me here for a minute.

 

Also, side note; when last did you have an actual conversation with someone over a landline? It’s a bit awkward; one kind of loses the knack. And yet, many were the evening’s that I would phone up a friend, after seeing them all day at school, and chat away for literally hours. “Call More Time” anyone? How many landline numbers do you remember? Right now I could call up the childhood homes of four of my good friends and the parents of two ex-boyfriends. If you were my friend in high school you might remember a clever little jingle designed to remember my landline number and if you do you should call me because that would be both awkward and fun. Nowadays the only time I call a landline is to order pizza or make a doctor’s appointment, both things I could also do online now that I come to think about it…

So yes, there came a time when we stopped talking and started typing. One of the predicaments we now faced was the problem of tone. Suddenly, it wasn’t always immediately obvious if someone was cross, flirting or being sarcastic. I suspect quite a lot of people fell afoul of this and got themselves into all kinds of trouble. But then we started winking at each other with semi-colons so that solved that. Is it Trevor Noah who does the bit on emoticons being like the cave paintings of the future?

 

I quickly learned to interpret the synthetically spoken version of these symbols – “colon right peren” for a smiley face, “colon left peren” for a sad face, “colon D” for a very happy face etc and that was pretty simple to get to grips with. But now, alas, gone are the colons and the brackets and suddenly I must contend with such puzzles as “sad pensive face” or “disappointed but relieved face” or, the ever ambiguous, “neutral face”. Also what’s the difference between a “neutral face” and an “expressionless face”? What’s the difference between a “confounded” and a “confused” face? And when will I ever have the occasion to send someone a “Smiling Pile of Pooh”? For those who are unaware, when you send me an emojie I’m not interpreting the little picture, I’m interpreting the verbal description my phone gives me of the little picture.

 

So, for example, what has caused me some confusion is the “slightly smiling face”. If I imagine a slightly smiling face I interpret this as non-committal, as though it comes along with a shrug and a sigh of, “I mean I’ll do it if you really need me to”. So if I get a message that says (and I use the word ‘says’ intentionally because the message is literally said to me), “Sure, I’d be happy to help out slightly smiling face”, this has the potential to send me into a spin of uncertainty about the motives of the sender; do they really want to help, have I pressured them to do something they don’t really feel like doing, am I inconveniencing them. Now maybe I am but maybe I’m just misinterpreting the “slightly smiling face”. What I have is the predicament of being unable to interpret tone in the same way that I would be able to if the conversation was being mediated by actual listening instead of the ‘listening-looking’ I have to do when I use Voice Over.

 

Now I do suspect that seeing people also struggle with the more ambiguous emojies of the “sad but also kind of happy with a sprinkling of nonchalance” variety. I made that last one up obviously. But it can’t be denied that emojies are a visual medium just like body language in the real world is a visual medium. In fact, emojies are virtual body language. And just as with body language in the real world, those of us who are non-visual struggle to interpret and participate in the seamless way that the seeing do or, at least, seem to.

 

Other elements of online communication that I find problematic are images, photographs and memes. So again for those who aren’t aware; if you send me an image of any kind via Whatsapp my phone will say, “Photo from ‘whatever your name is” which leaves me with nothing to work with. If you tag me in a meme on Facebook, as hilarious as it might be, my phone will provide me with the following information, “Image may contain text”. If you post photos my phone will identify certain key elements to give me at least some idea of what is contained in the image. This is a recently new development and is helpful but fragmented. So I may receive the following details, “Image may contain two people, people smiling, sunglasses, drink and outdoors”. I’ve been fascinated by the seemingly arbitrary moment when the children of friends stop being identified as ‘baby’ and start being identified as ‘person’. Some other friends have been reduced to their facial hair, “image may contain beard, outdoor and nature” leaving me with the bizarre mental image of a disembodied beard floating about in a forest glade.

 

Of course, while these descriptions can be helpful they can never fix the problem of blindness. Although I might hear, “Image may contain bride, wedding and outdoor”, the fact is, while I know there is a picture of you in a wedding dress, I can’t see that dress or your hair or the flowers you’re holding or the look on your face or all the things I want to see and although I wouldn’t be able to see those things in the real world either I would have the opportunity to have them described in more detail by real humans and I’m not above feeling you up.

 

I think by writing this I am asking for a few things. Am I asking for some sort of online utopia for the blind where all things are completely non-visual and mediated through listening rather than looking? Not at all! I am certainly not suggesting that you refrain from posting those pics of your lunch or your cat or your face. The world is a visual place and much of communication, both online and in the real world, is visually mediated in ways that are largely subconscious. This does make the point that disability is disabling, that no matter how much is done to make environments, actual and virtual, more accessible blindness is blindness and because it is blindness the things of sight will remain largely out of reach which is another blog post for another time. However, this doesn’t mean that there aren’t some helpful ways for the visual to engage with the non-visual online.

1. It’s probably best not to send me pictures via Whatsapp unless you add a little description including any text that appears in the image
2. If you tag me in something on Facebook (especially if it’s just me you’ve tagged because you think I’ll find something funny or interesting) please add a description including any text
3. By the same token, if you share a video with no dialogue with me there is no way for me to interpret the content so probably best to just not

The bottom line really is that if you want me to see something keep in mind that I am seeing with my ears.

That Time I Broke Up With My Job

Last month I resigned from my job. Despite the fact that I’d been wanting to leave for more than a year and felt strongly about my own development as well as a growing reluctance to be aligned with an organisation underpinned by a disability approach which I found pretty problematic, when it came time to go I felt really terrible. It’s hard to pin down the exact emotion but rather than the overwhelming relief I had expected I found that I felt really afraid and, even worse, guilty.

Why afraid? I kept having to remind myself that I wasn’t planning to walk away from the ultimate “dream” job in order to explore whether trapeze artistry might not be more my thing. And even if I was, why would that necessarily be a terrible thing to do? Obviously I then spent many minutes thinking of multiple reasons why I should not pursue a circus career, most notably, my complete lack of upper body strength which is probably a deal breaker. No, I had to keep reminding myself,  I was planning to leave a reasonably well-paying job in the disability sector which I mostly enjoyed doing with an organisation I mostly found incredibly frustrating in order to pursue a full-time PhD in Disability Studies, a perfectly logical step along my career path with the financial backing required to make it possible.

But, despite these little internal pep talks, I was spending most of my time fighting the creeping, persistent suspicion that I was tearing myself away, most foolishly, from the only job I could ever or will ever have.

And then I realised, “Oh, hang on, I know this feeling…” and I was reminded of a particular time some years ago when I made the decision to leave a relationship I was in, not necessarily a terrible relationship, but certainly a problematic one. Okay, so I’m breaking up with my job. It’s not working, I’m not happy, an impasse has been reached and there are some really problematic things affecting my emotional well-being, so despite the occasional few days when things feel like they might be getting better, it’s time to move on. Except, who else is ever going to love me?!

How much of this has to do with disability? Quite a bit I think.

In the case of that particular relationship, I certainly felt the pressure of, “Well he’s really great about the disability thing so maybe we can figure out the rest of the crap, I mean not everyone’s going to be okay with being with a blind partner and it’s likely that, if I leave now, I’m going to be indefinitely alone…” and obviously for single read unemployed.

Now, I’ve spent a fair amount of time working with unemployed, disabled job-seekers experiencing with them the struggle of finding work even when they hold numerous qualifications and possess mounds of charisma. There is nothing fun about being unemployed whatever anyone says, subsisting on a disability grant is not a good time. Of course, I have also been a qualified disabled job–seeker and remember well the increasing hopelessness as application after application was offered into the abyss never to be heard of again. As a side note, after walking away from that “not terrible but problematic” relationship I have, in fact, been single and will apparently be single indefinitely although being single is certainly not nearly as traumatic as being unemployed in my experience.

But, I’m not moving into a space of unemployment at all, despite the easy links made by many between student, flexible lifestyle, laziness and glorified unemployment. I certainly felt, during that awkward limbo that is a notice period, that my decision to tackle full-time studies was neither valued nor understood? That my availability for this, that and everything was assumed and my new situation was not going to be “work” but some sort of vague wafting about serving no particular end.

This I found pretty hard to swallow particularly because I carry a lot of anxiety about contributing, not being lazy and generally being a worthwhile person. Anxiety which is largely rooted in my experience of being disabled in society, of having my CV unquestioningly discarded, of being asked, “But what can they actually do?” by an HR manager over the phone before he knows he is speaking to an actual blind person. So being made to feel as though I was somehow taking an easy option or making a completely baffling life choice, as if I’d suddenly announced at age 29 that I was going to rather skip off to smoke pot and make origami hats instead of, you know, pursuing a doctoral degree in my field certainly caused me to feel as though I was possibly making a bad decision. Moving from employed, independent, contributing blind person to unemployed, directionless, “What are you doing again?” blind person. The power that question, “What is it you’re doing again?” has to completely devalue what it is you are doing is astounding. I have literally been asked if I’ll be doing a Learnership which was when I ultimately realised, “Okay, you just don’t get this at all”. Of course, if you know very much about the Learnership system you’ll see the very vast difference between an NQF 2 Call Centre Learnership and a Scarce Skills Doctoral Scholarship. Side note, there are some great jibes available to all of you regarding my scarce skills, you’re welcome and these would have been preferred to the common sense link between disabled person and Learnerships I encountered instead.

So that accounts for the fear, what was up with the guilt? Guilt and disability are often tightly bound up. On the part of the person with a disability this guilt is felt for the asking and the inconveniencing and the needing. Along with the unemployed people with visual impairments who I supported in my work were another whole group of individuals sticking out unhappy and sometimes downright horrible work situations, trapped by the belief that they could not and would not find alternate work and by the guilt of feeling that they owed their employer a debt of gratitude. Leaving any situation in pursuit of a new opportunity has pros and cons that should be weighed up but people with disabilities don’t seem to have the luxury of that kind of decision-making process. The refrain I heard often was, “Well, better the devil you know, right?”And this is how we become hostages, trapped between the reality of a society that discounts disability as holding any potential value, where our employment is likely to transgress an organisation’s bounds of what is considered normal on the one hand, and the tenuous comfort zone of, what probably feels like the sole organisation willing to “take a chance” on a disabled employee, despite the inconvenience, on the other.

And again I remembered my “not so terrible but also not so great” relationship and the heavy burden of guilt I felt in the decision to opt out; “He’s put up with this pretty unusual situation that other people have literally left over because they just couldn’t cope and he’s been kind of great so what right do I have to be unhappy?” How can I express dissatisfaction with my work situation when a large part of me feels like the organisation has done me a massive favour and I owe them? Added to this is the undeniable fact that, in my situation within the disability sector at least, I was wedged well and truly into a comfort zone. A space where I knew my needs would be met and where I was surrounded by understanding colleagues some of whom shared the experience of blindness or disability. In fact, this was the pinch, having to leave some truly brilliant people and relationships that I really value behind.

In the end though, the trade-off for comfort proved too high for me most particularly the constant tension between my own disability standpoint and the “sameness” script I felt consistently compelled to pedal and which I’ve written about here before. Also, continuously coming up against an unquestioned “charity model” approach to disability resulting in little to no engagement with the functioning of disablism within society and the organisation itself caused me to start exploring my options. And finally I reached the point where I was ready to say, “Job, we need to talk…I’m really sorry but I think we should start seeing other people…it’s not you, it’s me…actually, no reverse that…”

 

When Speech to Text Lets You Down

I love my IPhone. There was a time when I thought I would never say that. For the first few months of getting used to a touch screen device I had to hold myself back from throwing it out of the window. But now, almost three years and 2 IPhones later I truly don’t know how I would get along without my phone. This little device is my calendar, my newspaper, my notebook besides obviously linking me to social media and communication generally. I know every blindie has their own strong opinion about this stuff but mine is that Apple has really set the bar for integrated accessibility. The text to speech is really excellent but another accessibility feature which I use all the time is the speech to text. This means that I can dictate messages, calendar entries, Facebook statuses etc. and my phone renders this into text. This feature makes my life super easy but there have been occasions when speech to text has let me down with hilarious / Hello area’s results. Kind of like when predictive text lets sighted people down, speech to text sometimes just doesn’t get me especially when I’m trying to speak inconspicuously in a public place or just get mumbly. Luckily, I always listen back to what has been typed before I hit send so few of the below errors have actually reached the intended recipients. These are some of the more bizarre results.

“Can you fix me in the morning?”

“Can you fetch me in the morning?”

This one happened a lot when I started using speech to text and always leaves me humming “Fix You” by Coldplay for the rest of the day.

“I am fortunately not going to be able to make it”

“I’m unfortunately not going to be able to make it”

Freudian slip?

“I do have a suitable candidate I just need to check with him if he’d be willing to take pot”

“I do have a suitable candidate I just need to check with him if he’d be willing to take part”

“Hey, so would you be willing to take pot in a research project my friend is doing?” – I don’t know, answer that for yourselves…

“Hello area’s”

“Hilarious”

Okay, so I just need to say that “hello area’s” is not a thing. What? Why would I want to say hello to areas and what is with the apostrophe? Or could this refer to special designated greeting spaces, “on arrival please proceed to the hello areas”. But again, the apostrophe? Or is Areas a more common name than I imagined, “Hello Areas, how are you?” Perhaps it’s pronounced Ah-Ray-As? But again, the apostrophe?!

“I’m sorry to hear this, that is really hot”

“I’m sorry to hear this, that is really hard”

It goes without saying that this error sort of destroys the attempt at empathy. Your dog dying is not hot, not at all.

“I’m taking a break from the dance policy document I’m reading”

“I’m taking a break from the dense policy document I’m reading”

So there I was thinking that a dance policy would be fun, or at least more fun than a dense policy. No, turns out dance policies; a) exist and b) are just dense policies about regulating dances.

“We are based in Soul Trevor”

“We are based in Salt River”

Soul Trevor definitely looks like Stevie Wonder but plays the tenor sax. I’m not sure if I want to be based inside Soul Trevor though, just chilling in his large intestine….

“Parent Leigh, there is an accident on the free-way”

“Apparently there is an accident on the free-way”

“Hey Parent Hugo can you ask Parent Jenny to give me a call later, thanks”.

“I’m waiting for you in the cockpit”

“I’m waiting for you in the car park”

Hopefully I’m waiting for you to come and fly the plane and not attempting to do it myself because obvious…

“Sounds good Dyras”

“Sounds good diarised”

Parent Leigh Dyras is a home appliances brand. Again, addressing random nouns, this time of the proper variety, “Sounds good Defy, is LG planning on being there, I hope so, I haven’t seen that guy in ages!”

”Singing at waiting”

“Singing at wedding”

This is a very regular calendar entry for me and, if it’s for someone I don’t know, then this is a pretty accurate description. It generally does involve just a lot of waiting around. If I know you and have sung at your wedding, I love you and it was beautiful and amazing etc.

If you use this assistive feature please let me know if you have had similar Hello area’s situations….

 

 

 

 

 

 

 

 

Getting Older, Getting Blinder

I was scanning through some of my previous posts when I came across this written about 18 months ago in the post, “10 Reasons Why Being Blind is Awesome”:

“I also assume that I save quite a bit on make-up which I have no idea how to apply and never intend to try mostly because by the time my face completely disintegrates I will be absolutely incapable of witnessing the carnage so we’re all good”

Okay, so strike that, we are not all good! Reading this I wanted to laugh and cry at the same time because that sentence is so me, effortlessly nonchalant and cuttingly dismissive. While I was possibly less concerned when I wrote that I have definitely become quite concerned about the disintegration of my face.

I’ve always had an issue with dark rings under my eyes and over the past year or so these have gotten quite substantially worse. When I say dark rings I mean large, dark purple blotches that make me look like I’ve been punched in the face while causing my eyes to appear sunken. Small children have told me, in the way that only small children can, that I look like a zombie. I often notice this in photographs which, when viewed on my computer with magnification software, allow me to see my own face in more detail than I generally can by looking in the mirror unless I quite literally have my nose up against the glass. Especially when flanked by many of my very lovely, beautifully put together girlfriends (see pic – incidentally 2 of my favourite people in there!), I just look very drained. Generally, it must be said, I am very drained, but I’d prefer not to look it. So about a year ago I embarked on a mission to get this make-up business sorted.

I started by watching a whole host of YouTube tutorials posted by other blind women but I found these just made me confused, honestly, what do all these words mean?! Also, I was pretty convinced that I was not going to be able to attempt half the stuff these girls were talking about, less is more I feel. So I headed for the shops. I decided that I would be totally upfront with the first sales assistant who came my way, “I’m blind, my face is falling apart, please help” and if they showed the faintest hint of panic, “Um, what do I do with this woman?” I would run out of there. Obviously I wouldn’t literally run out of there, me running through all those little stands of products would be a recipe for carnage albeit humorous carnage. No, I would shuffle briskly out of there. Anyway, as it happened the most helpful woman fixed me up with basic, easy to apply (she promised), flipping exorbitantly expensive products. My first few attempts were disastrous and special thanks to my mother for not collapsing into fits of hysteria every time I emerged looking like a blotchy-zombie-clown. But slowly I have got the knack of a very basic make-up routine. That said, eye make-up remains a complete no-go-zone for me. Yes, I know there are stacks of YouTube clips of blind women doing their own eye-liner and mascara but no, just no. I’m happy to sit still while someone else wields spikey things close to my eyes but I just don’t see things going so well if I try. A blind acquaintance of mine has gone the permanent eye-liner route and I’m seriously considering this although it does sound a bit ouch. For now though I am happy with some foundation, blush and lipstick and while I don’t wear make-up every day (because I still can’t seem to factor the time into my morning routine) it’s nice to know I have the option. Despite this, there is a part of me that feels a bit guilty, as though I’ve let stoically self-assured, somewhat smug, past Michelle down and especially by actually sharing about this in a public forum. So, sorry past Michelle but, as much as I know you wouldn’t want me to admit it,  I’m actually completely freaked out by the fact that my face and body will age and change without me being able to see what is going on.

I’ve always been aware of the fact that my eyesight was going to degenerate. For as long as I can remember that reality has been something I’ve understood and over the past few years I’ve actually become reasonably comfortable with the idea of increasingly entering the world of the blind. I feel on many levels I’m equipped and ready for the journey particularly as I’ve become more and more immersed in the culture and community of blindness. But what has only occurred to me recently is that as I’m getting blinder I’m also getting older.

My friends and I are saying this to each other a lot lately, “Gosh, we’re getting old!” We’re old enough to be someone’s parent and some of us are; we’re old enough to have medical aid and need it. Many of us are also bemoaning the very noticeable change in our metabolisms as we approach and enter our thirties. I mean really! It seems that gone are the days of just a quick detox week and a bit of light exercise to shake the couple of extra kilos. No, eat a sandwich, put on 100kgs. Of course, it is all relative. A few weeks ago I visited a club of elderly women with my colleague to speak about the work that we do at the organisation we work for. After our presentation I was chatting to some of the women. One glamorous older lady approached me and said, “You’re a lovely looking girl and you’re still a baby, enjoy your life darling”. Now, obviously in comparison to an 87-year-old I am a baby. On the other hand, I was asked by a ten-year-old some time ago if I am my brother’s mother.

So regardless of what anyone else has to say about it, this year, for the first time, my experience as a woman getting blinder has bashed up against my experience as a woman getting older in uncomfortable ways. Much of this has to do with my tendency to imagine an extreme visual scenario in the face of not actually being able to see what the reality is. So tell me I have some greys and I’m Albus Dumbledore. A few months back my trusted beautician said in the very diplomatic and kind way that she has mastered, “The hairs above your lip have darkened a bit recently, it’s really not terribly noticeable but we can wax them if you want?” Now, I trust this woman implicitly but obviously on hearing this I became convinced that I’d been walking around looking like Super Mario. Fortunately, somewhere deep inside me there is a logical voice that says, “Would you actually just calm down!” But disregarding this voice of reason is easy when facing the whole business of living in a visual world. Being constantly looked at, without being able to look at yourself is often a source of deep anxiety for me and, I suspect, for other blind people as well. And of course no-one is actually going to tell you, “You know, you look like a wreck” but there is always the suspicion that you just might. As much as we’d like to deny it, how we look is highly valued in our society. It’s why the highest compliment we seem to be able to pay to older people is, “Gosh, you look fantastic!” I imagine that the getting older and getting blinder realities are going to continue colliding in all sorts of complex ways in my life and I honestly feel quite apprehensive about the ways in which my “acceptable femininity” is bound to be increasingly challenged by the coinciding realities of aging and disability. So, while I hold to many of my original assertions about the awesome benefits of blindness I think I might have to retract the one about the inability to witness one’s slow transformation into Gollum. Also, gone is the saving of much money, alas!