A new dirty word
Disability. Is it my new dirty word? Dis-abled? Less able? Less competent? Can’t do the same as everybody else? It’s a scary word. Both for the person labelled as disabled and for those working around them. The whole disabled vocabulary is fraught.
I ‘acquired’ my disability almost 9 years ago. I went online shopping and there it was. Right colour, right size, how could I resist? And having acquired it I decided that I would ‘declare’ it. Yes, I would stand up on the roof tops, armed with a megaphone and shout out to the world “Here I am, look at me, I’m disabled!” I have ‘disclosed’ my status because, you see, it was such a big secret.
How will you know, unless I tell you?
Moreover, my disability is ‘invisible’. It isn’t tattooed across my forehead. You probably wouldn’t even know unless I told you. And yet, inside of me, there’s a little voice screaming “I want to talk to you about it. I want you to talk to me about it”. But how will you know, unless I tell you? Legally, I’m not obliged. Morally, I do feel obliged. Not just for me. Not just for you. But for all those others who have that same voice inside them but are too scared to let it out.
It’s an egg-shell environment. Tread carefully. You never know who might be listening and how they might react. I don’t (normally!) go up to people and introduce myself “Hello, I’m Roland and I’m HIV + and I’m an AIDS survivor”. My disability is a part of me. A part I cannot escape. We are inextricably linked, me and HIV. HIV and me. But it’s not ALL of me. Get to know me first. Then get to know my disability.
If you’re a colleague …
As a colleague, understand that my diagnosis had a profound effect on my view of the world. On my view of my life. When you are given two weeks to live something changes. It has to change. My map of the world shifted. Dramatically. It is probably very different to your map. I know that. I realise that. But do you?
If you’re a line manager…
As my line manager, understand that there are good days. And not so good days. And downright bad days. I know I have a job to do. And I will do it. To the very best of my ability. But my map of the world has shifted. And it is probably very different to yours.
Do you want me to talk to you about this? Are you ready for this? But this is such a personal thing. How do I find the words? But if I don’t tell you, how do you know?
Dare to talk
And if we don’t talk, we cannot understand. And if we cannot understand, we fail. And I don’t want us to fail. Above all, I don’t want us to fail.
We can learn to talk. It may require a new vocabulary. It may need us to be more open. More honest. More vulnerable. But we can do it. I know we can.