Who Am I sign

Labels are everywhere, and we all seem to do it. We label ‘black’ people and ‘white’ people, we label ‘employed’ and ‘unemployed’, we label ‘gay’ and ‘lesbian’ and of course, there is the label of disability. Labels come to us naturally, and it is one of those things that over time has become human nature …. But when we really look at it, it doesn’t feel very human does it?

Just recently, I was faced with my own ‘label’.  Yes, I am a woman with a disability, but it went a little deeper than that. Am I an amputee or am I a Scleroderma patient?

I have had Scleroderma for over 30 years and only been an amputee for 8. However, for some reason I have felt much more comfortable with being an amputee than a patient with Scleroderma.

Scleroderma is an autoimmune disease which affects our connective tissue. Out of the many proteins we have in our bodies, one of them – collagen – overproduces and becomes harder and thicker. Scleroderma literally means ‘hard skin’. But is bigger than just skin deep. The extra collagen in our tissue can prevent organs from functioning as they should.

Although I live with Scleroderma every day, I don’t think about it and in some ways have blocked it out of my mind. The memories of this condition when it was at its worst were not happy or fond ones.

When I was a lot younger I was involved in the local foundation relating to Scleroderma. My most vivid memories attached to this experience were only how depressing it was. I had one friend die of the condition, and I watched people around me deteriorate and face debilitating medical challenges and truthfully, as a teenager – this scared me. So, I have hidden away from it for a very long time.

Don’t get me wrong, I still need to see my Rheumatologist once a year, so there is always the reminder it is there. Every time I gaze in the mirror, my daily shower and sometimes even the challenge of opening a jar out of the fridge, I am aware that it is there. I see it on me every day, and of course I know it is there and how to manage it. But the impact of how debilitating this condition can be in front of me day in and day out is not how I stayed a positive person for all of my life.

Maybe the sense of control is what makes me more comfortable of the label of amputee rather than Scleroderma patient. I chose to become an amputee, I didn’t choose Scleroderma. Since becoming an amputee it has created opportunities and positive life changes. It is rare that Scleroderma lets you do that.

Disability has been in my life for a very long time, so I suppose for me, I am used to labels now. Most people in society can get upset or offended at labels, and very rightly so. But here I am today feeling much more comfortable with my own labels – and that is just it, labels are personal. We should get to choose which ones we own, and which ones we reject.

A label attaches you to something; it is a marker or identifier of only part of who you are and society should not dictate to us which ones we fit into. I am an amputee, I am a Scleroderma patient and I am a woman with disability, but that is not all that I am. If we all sat down and counted our labels, which ones would you put in your ‘who am I?’ bucket?

You can also read this story on ABC’s The Drum – Labels can’t dictate who I am

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