Queer and Partially Blind in Egypt

I was born with a congenital defect in the retinas of both eyes. I found out after many years of searching and a couple of international visits to specialized doctors that the condition is an unusual form of Retinitis Pigmentosa - a condition that slowly deteriorates over time,  the extent of which varies from one person to another.

Medical language aside, living with this condition means that I have almost no central vision. That central part of your field of vision when you look straight ahead, where you have the sharpest and most detailed vision, the part that allows you to read comfortably, tell the time from a clock across the room, drive a car, recognize and read facial expressions of people standing more than half a meter away from you- all of that simply doesn’t exist for me. Instead, I can only rely on my peripheral vision. Although it is also affected  by my condition, it is still good enough to allow me to navigate the world fairly independently, albeit with a host of challenges.

I also live with the knowledge that it could gradually get worse.

The time when I truly discovered the nature of my eye condition, around the age of 24-25, was also the time when I started to come to terms with my sexuality and gender identity. It was a very hectic but necessary phase in my life. It was both a quarter-life crisis and a spiritual awakening. I was very happy to have finally come out to myself. Even though I knew it was only going to bring more challenges to my life, it was still a major relief to finally understand why I have been so uncomfortable and so confused for most of my life. Things finally made sense, and all that was left to do was to figure out how to go forward and try to be happy.

Despite the fact that reading had become more and more difficult over the years, I retained my love of reading and thirst for knowledge. With the help of colleagues and supervisors, and with several magnifying lenses, on-screen magnifying software, and other visual aid gadgets (and just sheer persistence), I was able to complete a PhD in a scientific field and return to Egypt at the age of 29 to try and navigate love and life as a queer adult with a disability.

No longer a student, I had to find a job, a place to continue living independently from my parents, and a way to grow my social life and search for love. Coming back was a big step that revealed many new challenges…

For the first time in my life, I was being misgendered almost on a daily basis. Whenever I walked down a busy street anywhere in Cairo, I would hear "is that a boy or a girl?”- people didn’t seem to care that I could hear them. Motorcyclists would yell at me, asking if I was a boy or a girl, as they zoomed past, clearly not with the purpose of getting an answer but rather to humiliate me.

Going into public bathrooms became a frequent source of anxiety. I always go for the women’s bathroom, but many think I don’t belong there. I always have to balance how badly I need the bathroom against the likelihood of having an uncomfortable interaction with a bathroom attendant or with someone inside throwing confused and judgmental looks at me. A couple of times, women in public bathrooms actually screamed when I walked in! And then of course there is always the occasional taxi driver or cashier who might hold an entire conversation with me using male pronouns and conjugations without ever realizing their mistake.

But I do remain very ambivalent in my feelings towards being “misgendered”. Given that I do not really identify fully either as a woman or as a man, am I really being “misgendered” when people think that I am a boy, or when they are unsure what I am…? I myself am not sure what I am, so why should they be? But what troubles me is not the confusion or misgendering itself, but rather the tone in which it usually happens – a tone that often has mockery in it, or some shadow of disgust, or the threat of violence.

Going into a public bathroom, I often hear a voice in my head asking if I might get beaten up if someone thinks I am a boy going into the women’s bathroom on purpose. They might beat me up first, then ask questions later. Some incidents are simply funny. Then there are brief moments when I enjoy male privilege; I’d go for a walk or jog in public without being harrassed if people think I’m a boy. But most of the time, it only leads to anxiety and a visceral feeling of being unsafe. Interestingly, there are also times when male strangers think I’m a boy, and then assume that it’s okay to sit or stand so close to me until our bodies touch, or that it’s okay to walk into me and then apologetically pat me on the shoulder. If I am seen as a boy amongst other boys and men, suddenly I have a lot less personal space! Being someone who is admittedly rather scared of men, and for good reason, I find such situations particularly uncomfortable and frightening.

My poor eyesight adds another level to this anxiety. I cannot, for example, cross a street quickly to avoid a potential negative encounter. If I am in an unfamiliar place, I cannot see or visualize all my possible escape routes, nor can I even detect all the possible threats around me.

My attempts to have a richer social life are also often bogged down by discomfort and difficulties caused by my condition. Even if I am sitting amongst good friends in a house that I have visited a hundred times, the inability to properly see people’s faces is at best annoying and at worst isolating and anxiety-provoking. My condition prevents me from making eye contact with people. Basically, I have to look slightly above a person’s head to use my peripheral vision to actually see them). I could try to “look” as if I’m making eye contact, but that means I would not actually be seeing the person’s face; I would be talking to a faceless person while they think I’m making eye contact with them . This is particularly problematic in dimly-lit rooms, parties, or bars where there are lots of new people, which sums up most of my social gatherings.

Dating is also a nightmare! Everything from texting a Tinder match for days or weeks before they agree to meet up, to actually meeting up and trying to communicate effectively despite missing lots of visual cues, to wondering when is a good time to explain that I am partially blind - these are all things that unfortunately prevent me from being present while having potentially romantic interactions.

Jobs are a whole other category of challenges. The shift from being a star student to just another highly qualified person in an overcrowded job market was made even worse by my disability. Many of the jobs I apply for require the applicant to have a driver’s license and/or to be able to conduct visual scientific surveys - both of which are impossible for me. A professional in my field at my level is also expected to work constantly, teaching, doing research, and churning out research papers at a pace that my eyesight simply would not allow. An employer who is presented with two highly qualified CVs is much more likely to choose the person who does not require special accommodation and maybe is not a “woman who looks like a teenage boy”. And so, a PhD notwithstanding, I continue to teach part-time and to freelance as much as I can in order to maintain my financial independence, which I am barely managing.

The challenges I face often make me wonder, how should the world be in order to accommodate people like me? I am privileged enough to still have enough vision to be able to physically navigate the world independently, and I was privileged enough to have access to some assistive technologies that allowed me to continue my education and to work. But there are many people in our societies who do not even have those privileges. I can only try to imagine what it might be like for a poor, blind, queer kid with uneducated parents, locked into the darkness and limitations of their world, unable to even access what they need to discover themselves, let alone to thrive and stay safe. Our societies really have a very long way to go.