Lived Experience: Disabilities in Focus - ‘Half-Done’
You have your moments of utter despair- because you are alone in your struggle, especially since you've been trying to play it normal your whole life
This is the fourth installment of a five-part series centering the knowledge and insights of people living with disabilities within the context of Punjabi and Sikh communities. You can read part one, Introducing Disabilities in Focus: Punjabi and Sikh Communities, by Shuranjeet Singh here, part two, Disabilities in Focus: Accessibility in Sikh Spaces, by Sukhjeen Kaur here, and part three, Disabilities in Focus: Chronic Illness Through The Lens Of ਗੁਰਬਾਨੀ/Gurbaanee, by Jasmeet Kaur here.
October 28, 2021 | 4 min. read | Disabilities in Focus Part 4
TW: Elements of Abuse and Trauma
Some of us live in total fear that we will be discovered when we are 'successful’. That our struggles and disabilities were all for nothing because, well we ended up in much better places than expected.
Humans generally like systems, we like logic and order. But what happens when we subvert that order? What happens when you are born ‘half-done’ instead of ‘complete’ like expected?
Apart from endless milestone achievements, nothing much else happens. Culturally, you are taught to ‘blend in’, one of the best accomplishments our parents will feel that they have made come true. You are taught to hide all your sensitivities towards the outside world, from the outside world.
You are taught that you are 'just like everyone else'. While others thrived at primary school, won awards and had a big group of friends and were loved by teachers and were very bright (a parent’s dream, right?). You tried your best to hide that you weren't like them. Punjabi culture whispers that I am a burden- the whispering becomes louder and louder with the endless routine check-ups and hospitalisations- I mean aren't children supposed to be full of life?
That's the point, I've never been full of life- I've nearly lost my life several times growing up. And each time I just got back up and marched on. I'm clearly lucky to be alive so of course I had to make it all work, I had to be like everyone else despite my very serious health issues. But I just wasn't because I was vulnerable and sick.
Going through repeated hospitalisation, from a very young age you realise what you can do to make it better for everyone else and that it's your fault if you end up in that hospital bed again because everyone else around you is trying so hard to make sure you are normal- so take your medication, go to school even if you feel sick, get good grades and make them happy- be a good, ‘normal’ kid.
You end up building a life where your biggest insecurities and vulnerability is your health. You know how bad the guilt is each time your health flares up- all that hard work your loved ones put in. You let your loved ones treat you the way they do because they deserve that, they deserve to be allowed to do that because I am a burden- I can see that now with my own eyes.
You search for stability which fails to exist because you aren't ‘normal’ even if you cry and pray to God that you should be by now. You cry and try to wish it all to be better because the pain is unbearable. But you continue to look like everyone else, you look 'normal enough', so you carry on.
Until one day the facade shatters in front of your eyes- tiny shards of broken glass reflect just how fractured and ‘defective’ you are. You are now labelled as mentally unwell. You can no longer pretend to be normal and that's when it all really becomes a problem for everyone else because you can no longer keep your mouth shut and march on.
You continually seek solace from the wrong people, because the wrong people have come by people like you before. You are manipulated and your words are twisted, your body is humiliated, and your insecurities are taken advantage of. The naivety and vulnerability you have as someone who is disabled exists. People who know how to abuse and use us, also exist. The wrong people know how to use you to their advantage, they lure you with false acceptance and love only to manipulate you to their advantage. You blame yourself for this. You think it is your fault. You are left feeling ‘half-done’, half finished, not good enough. You are scared to form any type of relationship with anyone because of the apparent pain you cause others with your disability, the burdens you lay on them.
You have your moments of utter despair- because you are alone in your struggle, especially since you've been trying to play it normal your whole life.
In those moments of utter despair, you no longer wish to play the martyr for yourself, you no longer wish to maintain the narrative that you are 'lucky' enough to be alive. At the cusp of life and death, you choose life- why? Why after endless nights praying to God to end this all, to relieve others from your horrendous self, why do you still choose life?
Because it's one of the first times in your life that you actually have a choice. Your own choice. You didn't get to choose when you were born- ‘half done’. But you get to choose now, and that choice only comes to fruition with acceptance and compassion. Because this is who you are, this is who you have always been. And if I don't understand in this lifetime why I came to be the way I did, why I've had to face so many struggles and probably will continue to do so- I can contently sit here with my faith and try my best to embody Chardi Kala wherever I go.
Following this series we are hoping to continue and build the conversation. If you are interested in getting involved with disability advocacy within Punjabi, Sikh and South Asian communities please complete this form and we will be in contact with further opportunities to get involved, meet new people and build our skills.
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