While I’ve been in the media talking about Say Hello, lots of people have called me “an inspiration”, “inspiring” or “inspirational”. I know you mean it as a compliment, but it’s a tricky thing for me and other disabled people to be seen as inspiring.
It can be really hard to refuse such a compliment so I want to explain my complex feelings about inspiration in writing (I have also devoted a whole chapter to it in Say Hello).
Stella Young coined the phrase inspiration porn – objectifying disabled people for the benefit of non disabled people. You should watch or read her Ted Talk .
Lots of others have written about inspiration porn, too. Google it.
Disabled people are often called inspirational because expectations of us are so low. When we do something ordinary, we are seen to be conquering our disability.
I am not an inspiration for living with ichthyosis, or for facing the world when I have a visibly different appearance, or for getting on with life. I am not an inspiration for working, for being lazy and watching Netflix when I should be cleaning the house, or for being able to cook lasagne from scratch. I am not an inspiration when I catch public transport or when I am standing in the queue at the supermarket.
I don’t want to be an inspiration just for existing, or to make non disabled people feel better about their own lives. (“If she can go out of the house looking like that, then what am I complaining about?”)
Writing a memoir is brave and perhaps inspiring due to the act of writing and sharing so much. But I am not inspiring for being me.
I do want to inspire other disabled people and people with ichthyosis and severe skin conditions to feel confident about their appearance, tell their own stories on their own terms and not feel the need to make others comfortable through apologising for their bodies and appearances or changing to fit in. I want to make space for other voices and mentor people where I can.
And I do want to inspire all people to do better in eliminating ableism and discrimination.
I’ve written a little about not wanting to be an inspiration in Say Hello (chapter 2). I really hope that helps you understand my feelings a little more
I can’t tell you how to interpret my words or work, but I can tell you my wishes about how I’d like to be seen.
For more information on my book Say Hello – where you can buy it, tour dates and international order details, click here.