Aren’t we funny? For years I’ve been told that I don’t look disabled, that I look “better than ever” or some other charming phrase. It is meant as a compliment; it is nice to look healthy and well and I take it as such. But in my work, it isn’t enough- I know that looking healthy and well has become a way for people to dismiss what can be traumatic effects of a chronic illness, neurological or otherwise.
There aren’t many of us living out and public, although this is changing. Maybe we need something akin to a Pride Parade of all the people with chronic illness in every town so people start to realise that we are everywhere. Old, young, female, male, trans, tall, short, different colours, gay, straight, bi, queer, different faces with different cultures have chronic illnesses, are disabled. We’ve just been afraid to come-out because we know we will be treated differently. Yet, when I was first diagnosed, I needed a hero, a ‘possibility model’, someone who was still working, making the most of her life, no matter what this disease threw at her.
Why is it such a big deal? Why do I or other people with MS need people to ‘come out’ about living with the condition? Growing up gay in Ireland was fairly bleak with the only bit of light the Doris Day musicals or the most likely lesbian found on TV during Wimbledon. When I found someone I could look too, I watched and learned.
We look for people who are like us so we can imagine some day we won’t be afraid any more, just like they aren’t afraid. We don’t come out- we are afraid of questions, the potential pitying, perhaps a little ashamed because we aren’t 100% healthy (not that anyone is ever 100%), afraid of being treated badly, the ‘head tilt’ apology (drops to one side, usually with a frown), dismissive tones and of course, afraid of being fired.
Being brave isn’t easy and I don’t want to be considered ‘brave’ if all I’m doing is being myself. But if we are to think of bravery as being yourself, and by being yourself you bring a different perspective and outlook, we’re on a good path. Diversity is good for business as Sara Sperling, currently Director of Human Resources at Snapchat and former leader of Diversity & Inclusion at Facebook says
“We want diverse teams. The research shows that diverse teams are going to build better products. We don’t have a simple product — we have a complex product. Because of that, we need diverse perspectives and diverse journeys and what that equals is people of different ethnicities and different paths.
If you’re sick or have a chronic illness or something else that causes dis-ease to your body or mind (we’re all going to have it sometime in our lives) wouldn’t you like to stay being you? Keep your aspirations, ambitions, work plans, life-style or dreams of joining the innovation celebration with Richard Branson or Arianna Huffington. In the meantime, think and reflect on why we hide our diseases/chronic conditions in our workplace in this so-called ‘brave new world’?
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This article first published on LinkedIn