Why I want my blindness to be part of this Everest summit project?

Thought I’d give a bit of background on my deafblindness and share why I want it to be part of this project. 

So I was born hard of hearing, went to a deaf nursery then transitioned to a mainstream school while maintaining a strong connection with the deaf community. 

One day, I had to get new glasses as they were starting to get wonky. Did the usual eye tests, expecting nothing more. But when I was doing a field test, the opticians thought that the machine was broken as they kept hitting the reset button and repeating instructions to me. It turns out, the machine was just fine; my eyes were the troublemakers. They told me that I must visit an eye specialist at the hospital and that I am not allowed to drive. My heart sank, wondering what was going on. 

I got diagnosed with a rare condition, Ushers Syndrome, being the most common cause for deafblindness. It was interesting how some professionals knew Exactly what it could be, while others were scratching their heads.

This was about eight years ago – the start of my journey into the world of fading sight. Some of you comment on my positive outlook. But it wasn’t always a walk in the park. Grief set in like an unwelcome guest, and I had a front-row seat to the whole show. At the same time, everything finally made sense. I could not understand why I was all of a sudden so embarrassingly clumsy, but eventually got the answer that I needed.

As soon as it all got confirmed, I emailed Guide Dogs charity straight away. I really REALLY needed a life companion. The best part? No mandatory cane training – I broke the rules, and I loved every bit of it.

It was such a weird moment though. Four years into university, and all of a sudden I was going to lectures with a guide dog by my side. I could still make eye contact, read whiteboards and even walk without my guide dog if I was feeling too stubborn! But wait, did people think I was just faking the whole blindness thing?

Throughout the years, I found my answer. I can't really blame them for their misconceptions. Heck, I even had my doubts when my eye specialist swapped my status from "partially sighted" to "blind". What I Do blame, is the media for painting this stereotypical image of a blind person.

For the longest time, I felt like I had an imposter syndrome for being blind. I kept questioning: ‘did they accidentally swapped my blood samples for genetic testing?’, ‘did I charm a charity into gifting me a guide dog?’. Slowly, I found my tribe in the blind community and a Facebook group where we swapped similar experiences like rare collectibles. Confidence and empowerment followed suit.

A standout moment came at a blind group meet up when I crossed paths with a dear friend. She had the exact same condition as me and was at the same stage of sight loss. She was surprised to see me having a guide dog thinking that she wasn’t qualified to have one herself just yet. She applied for it on the very same day we met.

This intimidating/tough-looking dude approached me on a side of a street one day, and he told me that he recently got told that he is now visually impaired. As he looked at my guide dog, he asked how it helps me out. He then told me that he struggles with the idea of using a cane or a guide dog, because you would never think of them using these assistive tools. I just wanted to give him a bear hug!

Another post I saw was how a student nurse at the hospital was too afraid to use her cane, because she feared of being labeled "unprofessional"! I really wish the Facebook #DoILookBlind movement got more traction.

So, folks with RP/Ushers like me? We are stubborn and wait until our situation crashes like a car wreck before we surrender to the reality and seek help.

In The Dark - is the only show that gets me screaming, “That's me, THAT’S ME!” at the screen, but it’s all fictional..

So, as I work towards this ambitious Everest journey, I am on a mission. A mission to change how we are seen, blow away those misconceptions, and maybe, just maybe, crack the code of representing us blind dynamos right. Why Everest specifically? Well, that’s for another post.

Follow me on Instagram @DeafBlindEverestProject for updates on my training, connections and everything in between!

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