Living with Muscular Dystrophy, a story of acceptance, perseverance and a positive mindset

I am being watched.

My body, my movements, my accent, my choice of clothing, my online activity. Everything down to the God-given colour of my skin is under surveillance, judged, examined, analysed and questioned.

Living in the Indian diaspora is to live in a constant hybrid state, always trying to balance the multiple worlds we belong to. Living as a Muslim is to be forever watched with suspicion. Living with a visible disability is to be stared at with both curiosity and amazement at what you can and cannot do. What follows is often an external conclusion about who you are and what you’re all about, all an attempt to fit you into an arbitrary box for the world’s convenience.

What am I? Sometimes even I’m not sure, but often it looks a little bit like this:

Indian, not Indian enough

Muslim, not Muslim enough

Disabled, not disabled enough

I was eight when 9/11 happened, 11 when I was diagnosed with Muscular Dystrophy, 11 when I started a Pakeha-majority private school drowning with privilege, and 14 when I became a permanent wheelchair user. This is the age group where we really begin to develop our personalities and perceptions of the world that we are getting ready to navigate. During these formative years, I was reminded every single day of my difference.

It was almost impossible then, not to internalise my hyper visibility and the surveillance of my changing body and my community. What resulted was hyper-sensitivity about how I portray myself to the world and distancing myself from everything that made me different in the eye of those who, today, don’t matter. Every mistake I made, no matter how minor, immediately led to me questioning my worth. Do I, a brown Muslim woman in a wheelchair, deserve all my blessings?

I grew to despise everything about myself while pretending to be ‘brave’ for people who needed me, the disabled girl, as their inspiration to get through their day. Needing to be ‘deserving’ of love and respect led to me wanting to be everything to everyone, losing myself in the process. I became an expert and dialling my identities up or down depending on who I needed to be in that moment. Don’t talk about your religion in case you scare them. Don’t talk about your culture in case they don’t get it.

It wasn’t until I started university when I began to question how much my self-talk was damaging me, but without the tools or know-how of how to fix it. As I grew, I made a conscious decision to change the conversation I have with myself. It sounds easy. It isn’t.

Being unapologetically kind to yourself after a lifetime of putting yourself down is a decision you make every minute of the day. If you spent the best years of your life rejecting everything that makes you, you, that is not your fault. That is your trauma response to a world built to keep you silenced and invisible.

The minute you realise this, the healing begins. I would be lying if I said it was easy, or that I get it right every day. I have been in therapy for more than two years, and I don’t see myself ending that anytime soon. Self-deprecation is a stubborn beast. It lives within you and is fed with the exposure to harm that we are addicted to on our billboards and devices.

The world is broken, and it will only be fixed if we stop glorifying the structures that make it broken in the first place by embracing the parts of ourselves that have been silenced. Misogyny, racism, Islamophobia, ableism, all the isms and all the phobias. Teach yourself that your imperfections are your strength, and your weapon against everything that is broken. Our future generations demand it from us.

I am a firm believer that everything happens for a reason. This belief is all due to my faith in a higher being. I am here, in this moment, in this body for a reason. Do I know what that reason is? No, and it doesn’t matter. What matters is that this is the fact, and that is enough for me.

By Latifa

Photography by Jessie Casson