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.

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3 thoughts on “On Blindness and the Freedom to Move

  1. Thank you Michelle for sharing this. It has, firstly, made me grateful for every bit of peripheral vision I have left … I can at least se blobs of clothing moving about. Secondly, I think that being so vulnerable gives your blind, low vision and sighted readers pernission to be honest about their frustrations, social anxieties and fears. Sharing this is not only brave, but really helpful too. Thank you.

    Like

  2. Thanks for your courage again Michelle. Your article got me wondering how one may go about offering to help someone in your situation. Barriers, real or only perceived, effect us all.

    Like

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