"One thing that's been very hard for me, I've had people say: 'Well, you're not disabled enough, you're not blind enough.' Seriously? Do you want to live in my world?"
Caroline Casey has ocular albinism, which she describes as like seeing the world as a "Zoom background with blur on." But her mission has been to help the rest of the world see how it can be more accessible and welcoming to people with all kinds of needs.
"The disability inequality crisis that has existed is because disability has been invisible. It's been invisible in business. It has been invisible in politics. It has been overlooked," she told CGTN in at interview at the World Economic Forum in Davos, Switzerland.
She believes that business is the key to changing the world – through attitudes in the workplace as well as the products and services they provide.
With support from international entrepreneurs including Richard Branson, she set up the Valuable 500 to bring together influential figures ready to change the world.
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She points to five things that all companies can do to improve their own inclusiveness right now:
1) Make the CEO accountable and informed about accessibility issues.
2) Set up an employee resource group including those with experience of disability
3) Improve their websites to cater for those who have difficulty reading or otherwise navigating online
4) Reexamine the products and services they offer to see how they can adapt them for the half of the population who either have a disability or a family member who is disabled
5) Develop inclusive marketing policies to improve the visibility of people with a range of needs.
Casey says that while her condition was diagnosed shortly after she was born, she was not told and bought up as a sighted child: "My parents never told me actually, because they wanted me to have the skills or to have the tenacity or the stubbornness to survive."
She found out by accident that she did not see the world the same way as other people when she was 17, but still did not want to live openly as disabled, saying she chose to remain "in the closet" until an incident at work revealed that she was different from her colleagues at consultancy firm Accenture.
"I have to say that hiding who you are so that you can belong is impossible," she says, praising the younger generation for being more open about disability.
Casey also worries that the world still recognizes conditions selectively, giving the example of debilitating digestive conditions which are not seen in the same light as more physically evident needs.
"You cannot be pick and mix on disability, you can't be a la carte about inclusion," she says.
Nevertheless, Casey says part of being inclusive is also to forgive those who make mistakes when trying to do the right thing, a problem that can be amplified by social media.
"Can we please use these moments of wrong to correct and to learn and to get better, but not to humiliate and cancel? Because I don't know about you, but I truly try to do it right. But I know I screw up all the time because I'm not an expert in all the experiences of being human. I'm just an expert in being me."