Recognising Anosmia (The lack of smell) as a disability #ICanSmellTheIgnorance


Recognising Anosmia (The lack of smell) as a disability #ICanSmellTheIgnorance
The Issue
I was 9 years old when my parents finally realised that it was not a child's imagination but a fact that their daughter could not smell. No doctor provided us with any proper insight, the matter was dusted under a rug as a lab technician explained that I was born without an ole factory nerve, the very nerve that detects smell.
It took us 9 years to understand what was wrong with me, why I always counted up only 4 senses. I still wonder, could something be done had this been noticed earlier, would something be done if more of us had the same problem? Questions which never found any answers because no one looked into them.
My inability to smell was always considered a non-issue as I continued to wonder. I would bring up bowls of food to question people if it was fit for consumption, asked people to describe the smells in a perfume bottle and raised suspicion in my chemistry teacher as I held my flasks up to my nose to confirm the pungent smell of H2S; all this to no avail, because I didn't even know what smelling was like.
Every time my friends giggled about a flavoured lipgloss or the smell of old books and coffee, I couldn't help but find myself pushed onto a sea of alienation. I would read stories which described the smell of mud after rainfall and wonder for hours how it could be my favourite smell.
My childhood alienation one day morphed into sheer panic when I didn't realise an LPG gas leak at home, vomited out old food and when I unwittingly ate a cake made in rum enough to make me very giddy.
I have lived my life without a whole sensory experience which reminded people of places, things and fond memories; with constant anxiety about not smelling like myself because at the end of the day, this perfume I am using wasn't chosen by me or carrying a pocket-sized bottle of Listerine mouth wash in my pocket throughout the years of my high school because a classmate unabashedly asked me if I knew I smelt horrible.
Through the 23 years of my life, I've never met someone who knew what Anosmia meant and yes maybe it does not seem like the gravest of an issue but we need to check our privilege and understand the trauma of that wine connoisseur or that chef who tragically lost their sense of smell.
At the heart of this campaign is the issue of anosmia generally: there is just very little awareness of the condition.
Our current education system still involves projects that need the sense of smell, anosmia still doesn't have any cure or aid, the 2016's RPwD act still does not consider it a 'benchmark' disability and it is still constantly trivialised; however, the dependency, the alienation, the danger and the reports are also sufferers of mental issues are all very much real.
The sense of smell is so closely related to our psyche, well being and detection of danger that a lack of this could be causing multiple issues, but due to the lack of recognition not much has been done to research, develop or even understand it.
I hope that through this campaign, more of us can discuss and understand this disability and its implications. I also believe that with your help I could reach out to the right people so that Anosmia can be recognised as a disability.
Through this primary effort, we may bring forth better research, sensitisation, funds that may aid someone suffering from anosmia and health insurance schemes that may be crucial for a professional who lost their job because of Anosmia.
The International Classification of Functioning, Disability and Health (ICF) defines disability as an umbrella term for impairments, activity limitations and participation restrictions; Anosmia even while affecting only 5% of the world's population is a disability and even without the aid should at least be recognised as one in the PwD act in India.
#ICanSmellTheIgnorance #AnosmiaADisability
[To understand this better I definitely recommend a read to this very crisp article: https://theconversation.com/anosmia-the-disability-of-being-noseblind-is-no-laughing-matter-67813

861
The Issue
I was 9 years old when my parents finally realised that it was not a child's imagination but a fact that their daughter could not smell. No doctor provided us with any proper insight, the matter was dusted under a rug as a lab technician explained that I was born without an ole factory nerve, the very nerve that detects smell.
It took us 9 years to understand what was wrong with me, why I always counted up only 4 senses. I still wonder, could something be done had this been noticed earlier, would something be done if more of us had the same problem? Questions which never found any answers because no one looked into them.
My inability to smell was always considered a non-issue as I continued to wonder. I would bring up bowls of food to question people if it was fit for consumption, asked people to describe the smells in a perfume bottle and raised suspicion in my chemistry teacher as I held my flasks up to my nose to confirm the pungent smell of H2S; all this to no avail, because I didn't even know what smelling was like.
Every time my friends giggled about a flavoured lipgloss or the smell of old books and coffee, I couldn't help but find myself pushed onto a sea of alienation. I would read stories which described the smell of mud after rainfall and wonder for hours how it could be my favourite smell.
My childhood alienation one day morphed into sheer panic when I didn't realise an LPG gas leak at home, vomited out old food and when I unwittingly ate a cake made in rum enough to make me very giddy.
I have lived my life without a whole sensory experience which reminded people of places, things and fond memories; with constant anxiety about not smelling like myself because at the end of the day, this perfume I am using wasn't chosen by me or carrying a pocket-sized bottle of Listerine mouth wash in my pocket throughout the years of my high school because a classmate unabashedly asked me if I knew I smelt horrible.
Through the 23 years of my life, I've never met someone who knew what Anosmia meant and yes maybe it does not seem like the gravest of an issue but we need to check our privilege and understand the trauma of that wine connoisseur or that chef who tragically lost their sense of smell.
At the heart of this campaign is the issue of anosmia generally: there is just very little awareness of the condition.
Our current education system still involves projects that need the sense of smell, anosmia still doesn't have any cure or aid, the 2016's RPwD act still does not consider it a 'benchmark' disability and it is still constantly trivialised; however, the dependency, the alienation, the danger and the reports are also sufferers of mental issues are all very much real.
The sense of smell is so closely related to our psyche, well being and detection of danger that a lack of this could be causing multiple issues, but due to the lack of recognition not much has been done to research, develop or even understand it.
I hope that through this campaign, more of us can discuss and understand this disability and its implications. I also believe that with your help I could reach out to the right people so that Anosmia can be recognised as a disability.
Through this primary effort, we may bring forth better research, sensitisation, funds that may aid someone suffering from anosmia and health insurance schemes that may be crucial for a professional who lost their job because of Anosmia.
The International Classification of Functioning, Disability and Health (ICF) defines disability as an umbrella term for impairments, activity limitations and participation restrictions; Anosmia even while affecting only 5% of the world's population is a disability and even without the aid should at least be recognised as one in the PwD act in India.
#ICanSmellTheIgnorance #AnosmiaADisability
[To understand this better I definitely recommend a read to this very crisp article: https://theconversation.com/anosmia-the-disability-of-being-noseblind-is-no-laughing-matter-67813

861
The Decision Makers
Petition created on 25 May 2020