'My Parents Hid My Disability From Me for Years, a Gift Revealed the Truth'

As a child, I'd always had dreams of renting race cars and motorbikes. I wanted to travel and be adventurous and free. So, for my 17th birthday, my father gifted me with a driving lesson. It just so happened that on that day, my sister and I were going to see an eye specialist. I was born and raised in Dublin, Ireland and while I was at school, I had realized that I had very blurry vision, but I thought that it was normal.

I'd been going to eye specialists all my life to support my sister because of her eye condition, ocular albinism, and I always felt very sorry for her. When we'd visit the eye specialist, I would get checked up, but nobody would ever speak to me about my eyes.

Caroline Casey Hid Her Disability
Caroline Casey pictured in Belfast, in 2022. Carrie Davenport

Finding out about my disability

So, on that day, my sister was examined first, and then I was examined. The ophthalmologist saw that it was my birthday and asked me what I was doing for it. I told him that I was going to collect my provisional license so that my dad could give me a driving lesson. He then looked at my mom and dad and said, "Why haven't you told her yet?"

That's how I found out that I had the same condition as my sister, which can lead to being classified as legally blind. I realized, at the age of 17, that I was disabled.

The first thought that came into my mind was that I could finally make sense of my very blurry vision. I always knew that I was different. But at the same time, I was in denial. I didn't believe the doctor because I didn't want to find out that I was disabled at 17 years old.

In hindsight, I believe that my father didn't tell me about my disability because he hadn't come to terms with the fact that two of his daughters are disabled. My dad also wanted me to be able to survive in the real world, and he wanted me to be tough because the world is tough.

After that day, I went into the metaphorical "disability closet" and I never spoke about it.

In 1997, when I was 26 years old, I got a job as a management consultant for a consulting company. At work, I used humor to deflect my disability, and I became an overachiever. I was always trying to be better in the hope that nobody would ever discover my condition, because, in my mind, I saw it as a weakness at the time.

I struggled a lot at work. On my first day, when my team was introducing themselves to me, I couldn't distinguish their faces and couldn't see their hands when they tried to shake mine. In general, I couldn't see people's faces when I would walk into a room. The worst thing was when somebody would think that I could see them, but I had no idea what they looked like. I would constantly end up talking to the wrong people, but I made a joke out of it sometimes because it was easier to be funny than to admit it.

Smaller things would also affect me, like being unable to see the gender symbol on the toilet door or the lift button. I also couldn't see PowerPoint presentations, but I tried very hard to find solutions so that my colleagues couldn't "catch me out."

Over time, I became exhausted trying to pretend that I could see, and trying to be somebody I wasn't in a highly competitive environment. In October 1999, I decided to make an appointment with human resources.

Caroline Casey Hid Her Disability
Caroline Casey at the World Economic Forum Annual Meeting in Davos, in 2023. Valuable 500

It wasn't in my nature to ask for help. As the meeting started, I said, "Hi, I can't see you right now," to which the staff member said, "That's no problem, we can reschedule." That's when I said, "No, I physically can't see you." That was the very first time in my life that I had said that, in a professional environment. I felt like a fraud that was stripped bare.

Human resources were absolutely amazing, and I'm thankful that the woman I spoke to was very supportive. But life still wasn't easy. I was very angry on the inside, and I felt lost. Nobody had given me the tools on how to truly accept myself. My colleagues started to treat me differently. They offered to cross the road with me, they stopped talking about what they saw on television the night before, and they were more attentive toward me. A few months later, my workplace sent me to an ophthalmologist to see what they could do to support me.

It was a pinnacle moment in my healing journey. The doctor told me that he wasn't going to examine me and that it wasn't my eyes that were the problem, it was my relationship with my eyes. He advised me to take some time off work so that my eyes could recover. He also told me that I had damaged my eyes by not owning my vision and not asking for help.

Owning my disability

I was furious with him, but he was tight. On that day, I decided to take some time off work and fulfil one of my childhood dreams, which was to travel the world. I immediately decided to travel across India. I began the journey that I am on today, of accepting who I am.

Since then, and for the last 23 years, I've been an activist. I left my old company in 2001 and became a social campaigner and activist for disability inclusion in 2002.

I believe that you can't have a hierarchy of inclusion; there's no such thing as the "inclusion Olympics," and nobody's more important than anybody else. When I was at my old workplace, I never saw any other disabled women around me, and I began thinking: Why would businesses leave them out? As far as I was concerned, businesses are the most powerful force on the planet, so, if they choose to exclude somebody, then society will follow.

Caroline Casey Hid Her Disability
Caroline Casey at the World Economic Forum Annual Meeting in Davos, in 2023. Valuable 500

I set up several organizations to help with disability inclusion over the years. My dad had always known that I wanted to do a global campaign that would end disability exclusion through business leadership. A few days before he passed away, in 2016, he pulled me in and whispered in my ear. He said, "What did I always tell you? You've got to be yourself, and you've got to stop worrying about what other people think and if you're going to fail." So, 10 days later, I founded Valuable 500.

Valuable 500 was born from sheer frustration about disability inclusion. In the 2000s, hardly any company would speak to me about disability. But in 2017, many CEOs spoke to me, but some of them told me they were focusing more on other aspects of inclusion. So, we had to fight harder.

Currently, 500 CEOs have signed with us and we represent 22 million employees, in 64 sectors and in 41 countries. We are building an extraordinary community.

Caroline Casey is an Irish disability activist and founder of the Valuable 500, a global business collective made up of 500 CEOs that are passionate about advocating for change around disability inclusion in business. You can find out more about it here.

All views expressed in this article are the author's own.

As told to Newsweek associate editor, Carine Harb.

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