My sister is hearing impaired. I don’t like to talk about it because no matter how much I love her or empathize with her; I will never truly understand what it means to live in her shoes. To live with a disability where one of her senses is absent.
The first time I understood what it truly meant to have 90db hearing loss was only two years ago. She had to go for an audiogram. In an audiogram, she has to wear headphones and the technician sends notes in different frequencies into that headphone. She has to inform the technician if she can hear the note. I was in the room with her and I could hear almost all the notes without the headphones and she could only hear a few of the high-pitched ones.
An audiogram, by design, is held in a soundproof room and once all the notes had ceased, I felt a vacuum around me, like a pressure on my ears and heart. That’s when it struck me, she lives with this kind of pressure all the time.
It is easy to pity someone who has a disability. The pity mostly rises inside us because we feel we’re normal and by our standards they are not. But what is normal? Whose definition of normal applies when my sister’s normal is having four senses instead of five?
When we came to know of her disability in 1996-1997, there weren’t a lot of resources available in India to help her. I shudder to think how my parents found the wherewithal to hunt for them. For the longest time, my mother had this huge folder of a correspondence course she did from John Tracy Clinic on helping children with hearing loss. And there was Ali Yavar Jung National Institute in Bombay where we took her initially for her speech development.
My sister doesn’t know sign language. She doesn’t wear hearing aids either. The first was a decision we made because we wanted her to develop her speaking abilities, whatever was possible. She hated her speech development lessons in any case. She fought with almost all her teachers until she found one while we were in Dehradun who she liked.
The second was her choice. The aids didn’t add anything to her life, apart from making her self-conscious. We all know how to do the alphabets in sign language though and have been using it for 26 years to communicate effectively with her.
As humans, we tend to look at things we don’t understand, or things that we cannot map into our own lived experience with suspicion. It scares us which is why Sakshi’s blog hop for International Day of Persons with Disabilities (IDPD) is such a great platform to share stories of people living with disability and their caregivers.
There’s another reason why we (my parents and I) don’t like to talk about my sister’s disability. It is because we hear the words “you’re brave” a lot and a version of “you have brought her up so well, you can’t tell by looking at her that she has a disability, she looks so normal.”
Normal. There’s that word again. To this, mom usually says “we didn’t raise her, she raised us.” To be fair, they probably think they’re being kind, applauding us for showing them a different story from the apathy, exclusion or pity that is shown people with disabilities within families. But what they don’t realize is how condescending it is to congratulate us for being human, caring and creating a space where she can thrive.
Because when it really comes down to it, that’s what they need. They only need a safe space to figure out life, to participate in being productive members of society and have people in their life who see the disability as part of their makeup and not the only thing that defines them.
When you look at disability from that lens – creating an ecosystem – inclusivity becomes a no brainer. Don’t we all have specific needs? Don’t we all need information provided to us a particular way so we can process it? Don’t we all have a need to have a purposeful life, however we may define it? Don’t we all sometimes need aids or tools to function to our optimum?
To me inclusivity has always been simple: an ecosystem where resources are available for anyone to realize their dreams.
How would you define inclusivity?
This post is a part of the International Day of Persons with Disability blog hop hosted by Sakshi Varma – Tripleamommy. Access all posts of #IDPD2024Bloghop here.
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