We form our identity from the world around us. That includes factors like our relationships with parents, siblings, and friends, even the choices we make like what we wear and the food we eat, among other factors.
What does that mean if you class yourself as having a disability or a disabled person does that mean this is your only identity!? – many people have different opinions when it comes to the terminology of disability and disabled, neither is wrong or right it’s how that person chooses to see themselves and that’s okay.
For me, I use a power wheelchair because I can’t walk, my body loves to remind me I sometimes need more rest than normal, I must keep track of countless medical appointments and equipment, I need extra support with daily tasks.
On the outside, people can see that I’m disabled, the wheelchair is kinda of the biggest give away! – I have a rare form of muscular dystrophy a progressive muscle wasting condition, along with a few other medical issues. But does that mean that’s it for me. Will people only ever see or think that my identity is made up of just ‘muscular dystrophy’.
Over the years I have questioned what makes me. Me. As we grow older our views may change, our relationships with family and family, we have great loves and loses even our surroundings may change. We also learn to adapt.
I have thought about my own identity many times over, as I’m sure many of you have too. I would be lying if I didn’t say I haven’t struggled in the past to understand and find where I fit in, especially in the very early years of being diagnosed with muscular dystrophy. But the one question I toss with back and forth, is do I see myself as disabled or not.
Now, If you ask my husband he would say. No I don’t see you as my ‘disabled wife’ I just see you. And In a way some days yes I would openly say no I don’t see myself in that way. But then other days it’s very hard not to, when you feel like it’s a constant battle for equality, diversity and inclusion.
I sound a bit like a flip flop when I say this but I can’t be the only one. Can I?
However. This very thought pattern has allowed me to accomplish some truly incredible goals, from campaigning, getting a job, lifelong friends, and enjoying life.
Could this way partially be because of the progressive nature of my form of MD. For the first two decades plus of my life, I could still participate in every day life like sports, horse riding, running, running up and down a bar, even drunken nights out with my friends. I wasn’t diagnosed until I was 24.
Surly as we grow and mature we take tiny bits from each life lessons to build on our identities, to become the person that stares back at you through the mirror. I don’t see myself needing to set a different standard for myself just because I have muscular dystrophy or because I do or don’t call myself a disabled person.
I don’t feel as bad for myself when I take the view that I’m not disabled, but rather different from the person next to me, like every human is. If I seek my identity in my disability, which happens from time to time because we’re all imperfect, I begin to spiral and lose track of who I am apart from Duchenne.
My identity is all of me – I am a sarcastic blonde with a bubbly personality and yet the biggest crybaby you will ever meet. I will be your friend for life and always fight by your side, but cut you off if you hurt me. I can be a bitch. A little Moody too. Say silly things. Be Funny and very boring.
I am a daughter. A wife. A sister. An auntie. A granddaughter. A work Colleague. A friend.
This is who I am. My disability is not who I am. Muscular Dystrophy is not who I am.
I am unapologetically just me!
Until next time. Tell me what you think?
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