I began to choose blindness reasonably late in life considering that I was born with not much sight to speak of. I was diagnosed with Retinitis Pigmentosa (RP) at the age of two. RP is a degenerative condition affecting the cells of the retina. It results in tunnel vision, night blindness, extreme light sensitivity and consistent sight loss. Although my parents were always honest with me about my visual impairment, “blind” was not a word that we used in our home. I always knew I didn’t see well and I remember confidently explaining that to children at my pre-school. I didn’t see well but I wasn’t blind. I understood blindness as society understands blindness. That is, as the polar opposite of sight. Therefore, as I could see colours, light and could read very large print with a magnifying glass I was not blind. I do remember being afraid of blindness and knowing from a young age that RP is degenerative and would worsen over time.
I can vividly recall waking up from a dream in which I was frantically running around my house switching on lights but encountering nothing but darkness. Looking back, from the perspective of severely degenerated eyesight, I can’t help but smile as I realise that in that dream, although running fast, I didn’t encounter a single obstacle. I easily dodged places where I knew tables and chairs were just as I do now, in real life, when running late for an appointment. I also found all the light switches with ease. At the time I wasn’t comforted by this though. Blindness was, even as someone with so little vision, a scary prospect just as it is for those who are fully sighted.
Blindness is constructed as synonymous with darkness. It is used to describe lostness; physical, emotional and spiritual. It evokes images of reaching, groping but remaining disconnected. I have a strong childhood memory from during the brief time in which I attended a school for the visually impaired. I am being taunted by an older boy and a group of girls. He is blind but he is following me quite quickly down a narrow walk-way with his arms outstretched. I seem to remember that he was fascinated by my long blonde hair and wanted to touch it. I’m new at the school and don’t know my way around, I feel lost and not confident enough of my surroundings to break into a full run. The group of girls are laughing and calling after me; “Kom terug meisie, hy wil jou soen” (come back girl, he wants to kiss you). In my memory this boy seems much bigger than me but he was probably no more than thirteen. This is one of my earliest memories of interacting with another blind person, it is so vivid that I still remember that boy’s name and find I take an instant dislike to anyone I meet who shares it. This is one of several unsettling memories I have from that short time. My experience there made it clear to me that blindness was something to separate from and not something to embrace.
And that is exactly what I did. I made it my mission to remove myself from blindness and everything that it means except when I could use it to my advantage. I only ever used the word “blind” as a manipulation tool. I’ve proven time and time again that nothing will get you faster service than claiming disability. The fear, on the part of the service provider, that you are on the verge of exploding with righteous anger, causing an embarrassing scene, is tangible. The next time you want to get rid of a telesales rep simply say; “You know I’m blind and my life is really hard”. Works like a charm every time. I used such manipulation tactics particularly affectively during my high school years. I knew that people responded well to stories of disabled people conquering the odds and so I delivered many stirring speeches, in which I freely used the terms “blind” and “disabled”, in order to win votes for student government or make the finals of public speaking contests.
I even wrote an emotive essay about my “disability journey” for my A Levels English exam in the hopes that I would score some sympathy points. I have also used the word “blind” in anger. I remember a few instances where I lost my cool and used the word “blind” to make others squirm with discomfort. Once, while rushing along a corridor in my high school I collided with a much older girl hurrying in the opposite direction. She righted herself and yelled; “What’s your problem, can’t you see where you’re going?” To which I replied, my voice trembling with rage, “I’d love to but I’m blind!” It was an exhilarating moment. As I watched that girl’s righteous indignation dissolve into confusion and embarrassment I realised that “blind” could be used as a weapon. It’s bold; monosyllable could be venomously spat at unsuspecting opponents leaving them awkward and spluttering.
A small group of bystanders even applauded nervously as I walked away as if, by challenging this older girl, I had won a victory for all the downtrodden eighth graders. But all I had done was play on society’s discomfort with disability in order to shame this girl. After all, my commitment to a sighted performance meant that there was no way she could have known I couldn’t see. I worry now that this moment may have been her first encounter with disability and that she probably ensured that it was her last. In that moment I put all my anger, frustration and fear into the word “blind” and relished throwing it at someone else. That was all I felt it was good for and usually preferred the delicately polite and comfortably ambiguous term “partially sighted”, until I began choosing blindness.
It happened slowly, without me really knowing it was happening at all. On a physical level, my sight was rapidly degenerating and I felt an increasing need to use the assistive devices which I owned but that had been gathering dust. I had undergone mobility training in high school and owned a white cane which I carried, folded up in my hand bag but never dared use. I also carried a hand-held magnifying glass which I used occasionally but hated feeling the stares of others and, even more, the discomfort of my friends. I became increasingly exhausted by the performance of sight which had always come so naturally to me.
I remember coming home in my first two weeks of studying at the University of Cape Town (UCT) and declaring, close to tears, that I was just so tired of counting steps. UCT was a dangerous obstacle course littered with poorly marked flights of steps and concrete bollards not to mention the constantly moving obstacles of fellow students. In order to maintain my sighted appearance I attempted to count and remember how many steps were in each of the flights I had to tackle every day, an impossible task. In order to achieve the appearance of sight I often had to allow others to see me as a bit clumsy and easily distracted, neither of which I am. I began to long to “tell the truth” as frightening as the truth was.
I also remember the first time I used a white cane. I was in my second year at UCT and somewhere between Tuesday and Wednesday I just got tired of pretending. I felt so visible. I knew that people were staring at me. I’m convinced that those who had seen me striding along caneless and seemingly confident just the day before thought I was doing some sort of performance art piece. Ever since that very first day I have been fascinated by the feeling of hyper-visibility that still steals over me as I walk along, now with a guide dog. The odd sensation of knowing you’re being watched without being able to see is one which I will always find unsettling.
The thing I was most afraid of on that first day was that I was compromising my femininity. I took special care with what I wore and I made sure to put in pretty earrings. I have never worn make-up and this had never bothered me until that time in my life when I began identifying as blind. I was convinced that by choosing to mark myself as disabled I was stripping myself of feminine attractiveness. By this time I was well into my undergraduate degree majoring in Gender Studies. I understood how society constructs gendered norms and how its narrow understanding of what it means to be disabled just does not fit within the boundaries of “acceptable femininity”. At that time I was dating a guy also at UCT. I relished meeting him on Jameson Plaza, preferably right in front of bustling lunch time Jammie steps. He’d approach me, hug and kiss me cane and all. I had to resist the urge to look around, grab the nearest passerby and say; “Did you see that, huh?” This tall, attractive man thinks I’m quite lovely. So there”.
Another part of learning blindness was learning to use the word “blind” in a way that I never had before, to describe myself and to locate myself within a broader group of blind people. I began to use the word “blind” intentionally in my every day interactions with those around me. I think this came as a shock to many of them. I can still often feel the ripple of discomfort radiating through a group as I openly describe myself as blind. I think the fact that I still have some limited vision is the central issue. As if they are wondering why on earth I would identify myself with blind people when I can still see, not much but maybe just enough not to have to be blind. Some people close to me have protested. They often use the well-worn phrase; “We just don’t see you as disabled”. Which I think translates as; “We don’t like it when you force us to associate you with our comfortable disability stereotypes because we know you and don’t want you to be like the people we imagine the disabled to be”. Perhaps with the best of intentions, what they are asking is for me to revert back to my sighted performance, maintaining my precarious grip on social acceptance as one of the “normal”.
I feel the same about people telling me that I am inspirational. This is something I used to enjoy hearing and get a kick out of manipulating but I find it now makes me quite uncomfortable. I know that for the most part people say this to me in love and with admiration but I still feel as though I’m simply getting a pat on the back for maintaining my honorary membership of the normalcy club.
I often feel the pressure of the trade-off as though by choosing blindness I am forsaking mainstream spaces and interactions for marginal ones. In many ways that is exactly what I, and others in my position, are doing when we let go of sighted performance because blindness is not an acceptable choice. This is complicated and far from a linear process. It is a constant balancing act as identities are traded. For now, there is no escaping the trade-off because society doesn’t recognise disabled experience as legitimate or worthwhile. By “disabled experience” I mean not the occasional “zero to hero” story of triumph on the news but the real daily moments of struggle, humour, frustration, triumph and fear that come with inhabiting a disabled body. The daily struggles of being blind are often small moments of annoyance; crawling on the floor in search of a dropped earring for ten minutes, organising transport to an event or walking into a half-open kitchen drawer.
The moments of humour are often downright bizarre. I was once offered a position on the Para-Olympic rowing team when the coach spotted me reading with a magnifying glass in a coffee shop. I turned him down over a giant piece of carrot cake. His utter bafflement at my refusal still makes me smile. I think he thought he was offering me the world but I just thought about all the cake I’d have to forgo and it was a compromise I just wasn’t willing to make. Laughter is an important part of negotiating the often tricky terrain of disabled experience and there is something powerful in the way disabled people laugh together.
At the same time, difficulty has to be acknowledged. Being blind is difficult and difficult things are hard to confront. We would all prefer a world where our comfort was unchallenged by difference. But every time I claim blindness and feel the ripples of discomfort I realise again that there is a strange power in choosing to own this difficult identity. It is the power to disturb and to challenge expectations.