May 2, 2015

When I Fell in Love with My Disability.


It feels like yesterday was the day for profound discussion about disability.

I was born with a condition called Arthrogryposis Multiplex Congenita, with a hand abnormality and clubfeet. Now can you say that 5 times quickly?!

What that really means is that I have minimal cartilage in my body and my joints have contractures, meaning they have these knobby bits on them that prevent them from fitting properly in together. In some areas of my body there are muscles, ligaments and tendons missing or so damaged that they aren’t actually doing anything anymore.

My hand abnormality was from amniotic band syndrome which is when before you’re born you make a fist with your hand in the uterus and a piece of skin wraps around your fingers holding them in place for a period of time. The clubfeet is when you’re tendons and ligaments are so tight around your ankles and feet that they’re turned inwards when you’re born.

I’ve had close on 30 procedures to correct or enable me to be more physically independent.

My disability has been very painful over the years and I’m well equipped at having cortisone injections, physio, osteo and surgery.

For most of my life I was really angry about being born like this. When I was a child I was so angry that I would take my pain out on my family and lash out. I felt that it wasn’t fair that I had ‘come out like this’ and that ‘no one understood what I was going through’.

Yes, no one really understood what I was going through, because we all look at life differently and experience our experiences in different ways. I was experiencing my life through anger and as a victim.

When I got into my teens, my attitude started to change because I was now swimming and was very good at it. I had something else to focus on. The times away from family with other people that were ‘like me’ taught me that I could achieve what I wanted too if I believed in myself.

But what I’ve noticed over the last few years whilst I have learnt to accept myself (notice, its not about accepting the disability, because that’s actually not my ‘self’) is that my life has changed dramatically.

In the past wherever I went, people would say the weirdest things to me. It was as if they only noticed my disability. I’ve had people congratulate me for opening doors, asked me how it is ‘down here’ or tell me that they work with ‘people like me’. All these comments naturally lead to angst about going out with my friends because I was just waiting for someone to make another comment.

I learnt to be witty with my answers to ‘teach them a lesson’. My friends began to protect me from these people or just be downright rude to them. In the end it wasn’t that much fun to go out because I was focusing on how I was going to have to protect myself when I was out, or how I’d have to justify to some chick why I was out in the first place ‘in my condition’.

In the last few years I’ve noticed that as I’ve accepted myself for who I was, not for someone who has a disability, that the comments have diminished—or maybe I just don’t notice them as much anymore because it’s not what I am focusing on.

So much of what we focus on is what we see in our lives, we are not what has happened to us or how we ‘came out’. Our soul, our inner truth is who we are.

And for all the Ablebods out there—can you, like not? If you’re out with your mates and someone in a wheelchair gets out of there chair to dance to a song they like, don’t yell at them and tell them they’re a faker—it’s rude. I don’t go around telling people that they have bad haircuts.


Author: Elle Steele

Editor: Alli Sarazen

Photo: Glen Beltz/Flickr

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Elle Steele