International Day of Persons with Disabilities — 2020 IDPWD theme: “NOT ALL DISABILITIES ARE VISIBLE”
On December 3rd it is International Day of Persons with Disabilities and the 2020 IDPWD theme: “NOT ALL DISABILITIES ARE VISIBLE”.
When I sat down to think of what I wanted to convey about invisible disabilities, I was trying to think of really profound initiatives. Suffice to say I could not think of any, and I kept coming back to what makes my everyday life different to peoples who do not have an invisible disability, the initial list I came up with was; larger medical bills, reliant on medical equipment, not able to plan with ease, constantly sworn at for using the disabled bathroom or car space even with valid ‘proof’, and a laundry list more… Someone recently asked me how I got my freedom pass for the London transport system and they asked if I could give them any tips or tricks, they then winked at me as to emphasize what a joke that someone who looked like me could actually need a disabled pass and I must have got it fraudulently.
People often ask me why I am so determined, fiercely resilient, And why I will not do not take no for an answer. I say it is because I live with a permanent invisible disability and for the first few years of becoming sick I was not believed by the system that is supposed to support you and be there when you need it the most.
I fought for my life many times while people around me still told me that I ‘looked fine’.
I was surrounded by a world that relied on physical external evidence before they could treat me with worth and dignity. We live in a world where not everything is as it seems. I’m sure everyone has heard the saying don’t judge a book by its cover. I am not only one of those books but I am also the author… (and yes, authors can have disabilities). And I get to write about how my story plays out…
I am the founder and CEO of C Talent, a talent management company that represents deaf and disabled artists, and we are proud to represent artists such as CJ Jones, who has worked on films such as Baby Driver (2017) and the Avatar franchise. Danny Murphy, who has starred in The Parts You Lose (2019) alongside Breaking Bads Aaron Paul. Tatiana Lee, who has modeled for brands such as Apple, Target, and Zappos. With have Paralympians, writers, directors, and many more. I am also the founder of Zetta Studios, which is set to be the world’s first-ever studio to be fully accessible for people with Disabilities, which is sustainable and founded by a woman. A structure that goes beyond compliance, where people come before architecture, and a workplace that sets a new standard for employers. The studio will home the most innovative technology in the industry. An interconnected community providing a truly desired live-work space. — ‘The Silicon Valley of Entertainment’.
I did not always have such a ‘go-getter’ spirit… It used to be more of a ‘go-get me the morphine’ kind…
When I first released I was sick, I was training to be a dancer at a prestigious dance college, I remember heads turning as I walked into class… I had lost almost half my body weight within just a few months, and that is where the judgment started, by friends, colleagues, and worst of all doctors. I was quickly misdiagnosed and told it was all in my head. Continuing to go dance college I would make sure I took all of the morning classes and fit as much of an entire 10 hour dance day between 6 am-11 am, these are the hours I could stay upright and not have to eat. When I would eat I became incredibly sick, I would have excruciating pain and would most often than not be taken to A&E, dosed up with morphine, and given a saline drip to attempt to rehydrate me. After not being able to carry on in this destructive cycle my incredible mum took me around the country to find a doctor that would actually listen. When a certain about of people tell you that you are making something up, that you are attention-seeking, and that you should go try herbal remedies, drink turmeric or rub rosemary on your stomach, or (and I quote) eat a burger… You start to believe them. I once tried to take their advice and eat a burger, I ended up in the critical care unit. My sickness was not made up it was a rare intestinal disorder that prevented my body from digesting food. After 8 major operations and a hell of a lot of trauma later, I was a 17-year-old girl with a permeant poop-bag attached to her stomach, PTSD, and autoimmune. Don’t the best things come in threes?
And this story is not a rarity, it is estimated that around 12 million people are misdiagnosed each year. It is also estimated 40,000 people die because of misdiagnosis. The reality of it is if we stopped being so judgmental, and if we truly listened to each other we could save lives. and improve the quality of a lot of them.
We live in an anonymous age. And in the workspace unfortunately disability can still be seen as a weakness, it can make someone feel like the odd one out due to chronic inequality, but before I move on let me tell you my disabilities have impacted and shaped my life in the most beautiful ways, they have shown me business acumen, and been a secret weapon in boardrooms. And I would not have started 4 successful businesses without them. I think entrepreneurship comes naturally for someone with a disability, as both require strong leadership skills, the ability to adapt, emotional intelligence, patience, empathy, sacrifice, and the capability to fight.
In a busy and time-pressed environment at work, it can be hard to disclose needs, and what may make your work experience better, but everyone should have the opportunity to be authentic and to thrive. Disclosure is our choice and listening in there. We don’t need special treatment, we just need equal treatment and true equality. I encourage questions and not doubts.
I believe to change the world we have to learn to tell and listen to a new set of stories about the world that we want to create with authentic voices behind those stories in a truly inclusive and accessible workspace.
We often fight for people with visible disabilities to be seen as beyond their disability, to be treated as equals, and not just be recognized for the disability. With invisible disabilities, we fight to be seen as someone with a disability and for that to be respected. But at the end of the day, it’s not complicated. Respect us all,
Listen, empathize, be patient… and please, do not suggest herbal remedies.
#IDPWD #Invisibledisability #DisabledandProud #PurpleLightup