I was born a mutant.
Well, not really, but I do have a genetic mutation that caused a retinal degeneration known as retinitis pigmentosa. And contrary to X-Men-like mutants who have a killer vision, my eyesight is, unfortunately, gradually getting worse.
For years, I've been trying to live like a "normal" person -- going out, meeting people, dating, working, without drawing any attention to my disability. But hiding it is becoming increasingly challenging and so I thought to myself: "Why wouldn't I talk about it openly?"
One of the hardest things about being visually impaired (in addition to having a really bad eyesight) is that people can't see that you are handicapped. You don't have a cane, a dog or any external assistance that signals a disability. And then when you explain it to them, they don't always get it. The number of times I've heard the sentences "Why don't you wear glasses?" or "Can't you get laser treatment?" Well, no, there is literally nothing I can do as it is a degenerative disease for which there is no cure.
It's a constant stigma I've had to learn to live with. "Do I tell people I don't see well?" "Will they think less of me and deem me weaker?" "Do I ask for help when I need it?" It sounds easy enough, but asking for help means that you have to expose your vulnerability in a society that prides itself on perfection and over-achievement.
Telling a blind date (no pun intended) that you suffer from a retinal degeneration isn't sexy. Informing a prospective employer that you are visually slower than others does not give you a competitive edge. Asking a stranger to help you down a staircase can be awkward. And when you do take that leap of faith by trusting in the other's ability to empathize, it can be disheartening. While on a trip in Bali, a girl burst out laughing when I explained to the group that I was visually impaired and may need assistance throughout the evening. Yes, it shows a very poor character on her end, but these types of reactions can reinforce your feeling of being silly, clumsy, weird and an overall burden to others.
And so this is what led me to begin writing about my struggle openly. By doing so, I hope that others will feel more comfortable talking about it so that we can de-stigmatize this disability.
I've been a reporter for several years, covering tech, startups, and venture capital. I get to meet outstanding people and write about fascinating topics -- but the more I dive into the innovative wonders of Silicon Valley, the more I grow frustrated. Why is everyone so laser-focused on computer vision when there is still so much to be done for human vision? Think about it: I'm a 31-year-old woman in perfectly good health who faces daily struggles, such as:
- Recognizing someone I know,
- Having difficulty reading a text or reconstructing an image,
- Being unable to drive,
- Being unable to navigate by myself at night or in places with low light,
- Needing assistance to walk to the restroom in a dimly-lit bar or restaurant,
- Having difficulty putting on makeup,
- Going down a staircase,
- Bumping into things and bruising myself,
- Needing a flashlight to read a menu,
- Having to use the zoom option on every device
And the list goes on. My intention here isn't to elicit pity but rather to underline just how hard it is to be visually impaired while trying to lead a normal life.
My goal is to try and start a dialogue around this, provide more clarity about what is currently being developed and hopefully find a cure in the process. If you or someone close suffers from a retinal degeneration, or any form of visual impairment, please share or comment so that we can get the ball rolling!