Sinead Burke on the ‘brave and rebellious act’ we all need to do often

Each week, Benjamin Law asks public figures to discuss the subjects we’re told to keep private by getting them to roll a die. The numbers they land on are the topics they’re given. This week, he talks to Sinead Burke. The Irish writer, broadcaster, public speaker and disability advocate, 33, has been a UK Vogue cover girl – twice. She’s the founder of the accessibility consultancy Tilting the Lens.

DEATH

The eldest of five, you were raised in Dublin. What were you told about death growing up? In Ireland, Catholicism and the church have had a significant hold on the country. I belong to the first generation to experience a loosening of that hold, both in terms of our legislation and politics. But I still think death is something that unites the Irish. We say we only see each other at funerals. We bury our dead quickly – if you die in Ireland, your funeral’s within three days – so the grief process is immediate. So I think death is one of those final places – quite literally – in which the history of our culture and country still takes shape in modern ways.

You’ve spoken about how common it is for a stranger to take a photo of you in the street without consent. People point and laugh. How does a little part of you not die? I remember being very young in the playground at school and being aware of how others treated me because of my disability and how I look. I remember being very upset and going home and talking to my parents. My mother asked me something quite revelatory at the time: “Who do you want to be? Do you want to be you, the person who has no choice about how they look? Or that other person, who’s actively choosing to make you feel less?”

In that moment, I decided that I wanted to be me. Of course, in moments when somebody behaves cruelly, I feel anger, disappointment and shame. But I immediately have to throw those emotions away because they dissolve your soul. They make you want to be reclusive. They make you want to shrink yourself. I have my mother’s voice in my head as my inner monologue. To choose to be you – in conflict with those who choose to make you feel less – is a brave and rebellious act. And one that we should all do as often as we can.

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BODIES

How did you feel about your body growing up? When I was 11, I had a choice about whether or not I would undertake limb-lengthening surgery: deliberate fracturing of bones over a year. They’re quite aggressively pushed apart so that new bone grows. I was promised, at most, six inches [15cm] in height. I didn’t realise the gravity of the decision at 11, but I decided to be me. I would struggle to make that same decision now because the internet exists, Instagram exists and there’s a different cacophony of voices in all of our heads. But that decision, at 11, was fundamental to the person that I’ve become.

What did appearing on last month’s cover of British Vogue do for your self-perception – and other people’s perception of bodies like yours? I’m very proud of the image. What it expresses to me – or what I was feeling in that moment – is power. It feels different to images that I’ve seen of myself in the past – often through a non-disabled lens – which are either sympathetic or inspirational or which present me in a way that makes me look smaller so that the world looks bigger. The Vogue pictures made me feel like I’m the CEO of a company and creating change in the world. I’m very grateful for the feedback and conversations I’ve had with people about what it means to have this level of intersectional representation. But there’s still part of me that knows that although these images are nice, it can’t always be me: it has to be others, too. More representation is always required.