The World Health Organization estimates that 1 billion people have a lived experience of disability, equating to roughly 15% of the global population. But despite constituting the largest minority group in the world, many individuals still chose to hide their disability in the workplace.
Research from EY and the Valuable 500 reveals that although 7% of CEOs have a lived experience of disability, 80% of them choose to hide it.
Disability Pride Month takes place in July each year and is aimed at recognising the diversity of people within this community, their contribution to society and to encourage more people to speak openly about their disability.
As part of the month’s events, Raconteur hosted a panel discussion featuring Caroline Casey, founder of The Valuable 500; Ollie Thorn, senior manager DE&I client solutions at Michael Page; Burcu Borysik, head of policy and campaigns at charity Crohn’s & Colitis UK; and Mark Esho, founder of The Circle Foundation.
Here, each of the panellists discusses their experiences of disability and what Disability Pride means to them.
Caroline Casey, founder, The Valuable 500
I initially hid my disability. I found out at the age of 17 that I had ocular albinism - people forget that 80% of disability is invisible. Although I am visually impaired, I could get away with pretending I could see. I hid my disability right through university and into my first job, when I was working for Accenture, because I thought I wouldn’t have the same chances as everybody else. It was 22 years ago that I came out of the disability closet and I now find the idea of anybody hiding their true selves agonising.Maya Angelou is one of my favourite authors and poets and an incredible activist, and she says there’s no greater agony than an untold story inside you. For me, Disability Pride has an energy that is driven by younger people and recognises the pride around our differences. Disability should not be something to be ashamed of but we need to break down the stigma that still exists. I don’t want anybody to ever have to change who they are. The Valuable 500 has talked a lot with businesses that want to avoid the word disability and call it diffability or different ability. This ignores the fact that disability is part of our identity and something we should be proud of. Whatever word is used, it’s the intentionality behind that word, but we can’t avoid that this is part of us. It is a really interesting space to be in but I am proud of my disability today and I’m proud to shout about that as part of my identity. It does not define me, but it is part of my identity.
Mark Esho MBE, founder, The Circle Foundation
I’m going to be slightly contentious here, because I don’t like the word disability. It has got so many negative connotations such as disease, accident, inability or restriction. Although I embrace my disability, I think it would be better if we use a different word, like differently-abled. My parents are Nigerian and disability has so many negative connotations there. If you’re disabled in Nigeria, some think you’ve been cursed and you can be sent to herbalists to try to cure you.I also have a friend who’s from India, and his parents locked him away for five years because they were ashamed of him. So, for me, going back to that particular word, I struggle with it. How do you become proud of a word that has got so many negative connotations?
Ollie Thorn, senior manager, DEu0026I client solutions, Michael Page
Disability is part of us and it’s not something we can shy away from. I sustained my injury about 10 years ago and now use a wheelchair. I didn’t realise I had any preconceptions about disability until I was lying in a hospital bed with a disability myself.I went from someone who felt like the world was at their feet, that they could go and do anything, to all of a sudden being so constrained in my thoughts and what I believed I was capable of. I think that’s because it was something that was subconsciously fed to me in my life up until that point. I was incredibly lucky to have a phenomenal support structure around me and people who said: ‘That’s not the case. You can still go out and do all of these incredible things with your life.’ There are things I can’t do, but I can always try and find a way, within reason. I’m not going to climb Mount Everest, for example, but I can carry on enjoying life and challenging myself. Because disability is part of us, we need to celebrate that difference. Because of the negative narrative around disability, people have preconceptions about what it means. Instead, we need to start celebrating some of the incredible attributes that people with disabilities have.People with a disability have to live and try to be successful in a world that isn’t set up for them. This means we have to be incredibly resourceful and adaptable, to think outside the box and constantly solve problems. People that don’t necessarily understand or have that lived experience don’t always realise there are these additional challenges. Disability means so many different things to so many different people - even people with the same disability can have an incredibly different experience of it. But Disability Pride is a chance for us all to come together, connect, try to change that narrative and those preconceptions, and open up opportunities for others. Let’s make the world a better place for the next wave of people coming through. We’re not just doing it for people with a disability, it’s going to improve society as a whole.
Burcu Borysik, head of policy and campaigns, Crohn’s u0026 Colitis UK
For me, disability is really about the barriers that people living with health conditions face that prevent them from having a good quality of life. Disability Pride is about levelling up that playing field and making sure everyone has an equal chance.Disabled people constitute one of the largest minority groups in the workplace and the issue cuts across all ages, genders, sexualities, ethnicities, religions and socioeconomic backgrounds. Yet we still see people being prevented from accessing education or work, or progressing in their careers. It also presents multiple barriers to making friends and forming social connections and relationships. This is something that doesn’t sit right with me.The invisibility of disability is also important to recognise because many disabilities cannot be seen. With Crohn’s or colitis, for example, you cannot see inflammation in the gut unless you have the right equipment to be able to visualise it. But they’re also invisible because we simply don’t have the language and the confidence to be able to describe the symptoms. It’s not very easy for people like me, who live with the condition, to talk to strangers about poo or diarrhoea, and it’s those sorts of barriers that we need to be addressing this month and the rest of the year.