Labels. They’re a blessing and a curse to live with. Fat. Thin. Beautiful. Ugly. Smart. Stupid. Rich. Poor. Athletic. Lazy. Normal. Different. Disabled. Able bodied.
Labels are temporary but can result in our identities and esteem being damaged. We can peel off the labels that others stick on us. Or we can embrace them – let them become part of our identity.
I was never labeled as having a disability or chronic illness by anyone other than myself. I was called lots of other names relating to my appearance, but never anything relating to disability.
Disability seemed so much more than a rare severe skin condition called Ichthyosis. I don’t have an intellectual impairment and my mobility isn’t affected unless I am very sore. And I don’t take enough tablets to have a chronic illness. I went through life thinking that my condition wasn’t bad for me because I coped with it daily. It was only my skin, right? That’s just a visual impairment? Wrong. My parents, nurses and doctors knew how severe it was, and told me that if a skin infection reached my blood stream, it could be fatal.
It wasn’t until my mid 20s that I identified with having a disability and a chronic illness. I thought ‘disability’ and ‘chronic illness’ had really negative connotations – and why wouldn’t I when society makes ableist slurs, employment of people with disabilities is low and physical and attitudinal barriers are rife? I also never saw many positive, ordinary stories of disability in the media – disability is often portrayed as tragedy or heroic and nothing in between. There is a limited view of disability that’s portrayed in the media – limited conditions and limited expectations. And I thought that I had to be assessed by a doctor or the government to give me a label in addition to my skin condition – a label of disability or chronic illness? I didn’t realise how positive it could be to embrace these labels.
I started mentoring at a hospital program for young people with chronic illnesses when I was 26. I wanted to provide guidance and support to them, based on my experiences. But they taught me so much more than I was prepared for. I learnt about a wide range of chronic illnesses and I learnt about myself. We had so much in common despite our different conditions. I realised that like them, I missed a lot of school (and work) to attend medical appointments and stay in hospital. My condition also made it hard for me to make friends. I have more than three specialists. My condition has a really long, unpronounceable name. And it is more severe than a temporary illness like a cold or a stomach bug.
And then, a couple of years later, I immersed myself in the Melbourne disability community through writing and community TV. I saw that people with varying disabilities face the same sorts of questions, physical and attitudinal barriers and discrimination. My friends in wheelchairs receive similar, intrusive questions about their disabilities, just as I do.
Most recently, I discovered there is a vibrant and supportive community of people with facial differences.
Giving myself the labels of ‘disabled’ and ‘chronically ill’ has been very empowering. I feel great sense of belonging – and that’s as big a relief as a diagnosis is. It’s given me pride. I am proud to belong to an amazing, talented, diverse, passionate community that’s committed to improving the lives of others. It’s also given me the courage to speak up and say I can’t do something because of my body’s limitations, and call out discriminatory behaviour. My knowledge of the social model of disability has grown – and I’ve embraced and practice that. I’ve become aware of sensitivities around language which has helped me communicate better. I’ve taken control of my own health, communicating my needs to doctors and educating them during appointments and through speaking at medical conferences. And I’ve met some wonderful people who are disabled and/or chronically ill, who are affected by my skin condition, or who are allies of our community. My writing and speaking career has thrived. These aren’t labels of convenience – these are part of my identity.
Above all, I’ve learnt that it is ok to identify with having a disability and chronic illness, because these labels are not negative. These labels are permanently fixed to my identity and I am proud and feel included. Embracing these labels helped me to love myself.