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Disability is still a taboo. Society demands the disabled to be upbeat if not heroes. Remember the images of that para athlete — be someone or go home! Be it a mental or physical disability — hearing it or seeing it makes people uncomfortable.
It hurts so much!
And I only woke up (at 10 am) and orchestrated the band in the kitchen preparing a simple meal. I used all my energy to open the refrigerator, identify the ingredients we had at home, and tell my little minions what they needed to do to cook up a meal for themselves.
But the bell rang, a little too soon. I had, but just sat down. I hurry to the door anyway. Likewise, I am an extrovert, after all. I have a smile on my face as my body feels like it’s going to collapse. It is my daughter’s friend and her mom.
The two girls quickly disappear. They have secrets to share.
I am exhausted, I don’t invite the mom in. I don’t offer tea or snacks. Likewise, I borrow energy from tomorrow and use it to stand, talk and smile. Not only that, but I am trained to be a polite, sweet lady. Furthermore, I can’t say I am tired, I need to rest.
Amongst other humans, I better always be smiling and look happy. I don’t want my kids friendships to suffer because of me. Thankfully, the kids are kinder than adults.
As I shut the door, I hear the other mom say, “They could have offered tea. We were so nice to them when their daughter came over.” It crushes me.
My husband, who didn’t need to witness any of this, just knows what happened. After all, it’s not the first time. “You don’t have to be nice to others when you are in pain” he reminds me.
How I wish he was right. How I wish all those tally marks in my diary that I made, when I knew I was being graded a C (from able members of this society), did not exist.
I used to talk about it openly, and then I lost all my friends and extended family! So the demand is that disability be hidden. I am exhausted. This time I collapse in bed. As if this disability was not enough. I have to suffer judgment too! Why is disability considered ugly?
I wish for acceptance and space from this society. Don’t they understand if they offered it, I might be better able to deal with the actual disability? Maybe I would recover too?
For a moment there, my mind flashes back to the 15-year-old me who was not disabled. I remember all the acceptance I had back then. It’s all gone. Our so-called progressive society continues to impose invisible pressures on the disabled.
They “have to” to hide their ugliness unless they can be an inspiration.
Go big or go home! I just want to live!
Image source: peopleimages via Getty Images, free on CanvaPro
Shipra is an Engineering Manager living in the US of A. She is passionate about disability, rights for minorities, climate change and other related issues. While her full time job and managing a household with read more...
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