Me, my culture and my disability

Growing up in an Indian household as a female with an incurable, degenerative and invisible disability has not always been easy. It has brought many additional challenges to my daily life, including the day-to-day management of my disability whilst leading the fulfilling life I want. Yet I would not change it for anything. I love my faith, and feel incomplete without it. Through my challenges and hardship it brought me a different perspective on the way I view the world and the people around me. I have overcome challenges and broken down stigmas within culture, society, employment and life in general — and it has made me more resilient, compassionate, driven and determined to make a change for those around me and the next generation.

To share more of my world and the challenges I have and still experience, I want to give a small glimpse into some of the things and comments I have heard from individuals within the South Asian community and society:

• "Oh, you must have done something bad in your previous life to deserve a life like this."
• "It's such a shame — she's such a pretty girl, but look what god has done to her. I hope she gets better."
• "She won't be able to do it, she can't even walk properly."
• "There is nothing wrong with her, she's just exaggerating. She looks fine to me."

My reason for sharing this is because it is hard just living in this world. It is even harder living in this world when you have a health condition or a disability — and even harder still when you are continually judged and made to feel like you are not worthy.

For people reading this wondering what they can do

• Have unconditional positive regard — don't judge.
• Be curious and ask questions. Yes, it will be uncomfortable — that's a sign you're doing it right.
• Educate yourself on disability topics.
• Ask yourself: "Am I doing my best to make this environment a more inclusive workplace? What more can I be doing?"

For people who have a disability or are going through similar experiences

• You are beautiful the way you are.
• Your imperfections are your perfections.
• Your disability is your superpower.
• You are more resilient than you think — do not stop, and continue living the life you want.