This is my NORMAL!

By Sugandha Gupta

I am Sugandha Gupta, a textile artist, designer, maker, scholar, and educator. I happen to also be a person with a disability due to my condition of Albinism. I was born and raised in the capital city of India, New Delhi. Living with a condition that sets you apart from the crowd in a world that does not inculcate inclusion is not easy. However, it can be an interesting journey full of adventures and even bring immense happiness as well as, success through endurance, courage, persistence, and resilience.

 This article is my perspective on disability from an angle of a state of what I call ‘My Normal’.  I am striving to discuss social, professional and personal barriers that are merely a mirage, all created in our minds and fed to us subconsciously throughout our lives through the various modalities of learning, social interaction and communal setting of the satirical society.  We can indeed design a new world and be our ’NORMAL’ selves without compromising on some of the things that make us civilized human beings who thrive on connections, affection, and compassion.

I am striving to start a dialogue and point out the contradictions in our society that illustrate that, in today’s world of internet, digital media, artificial intelligence and mechanization, it is ‘normal’ that we live literally in so many different worlds such as a world of Facebook, Instagram, Twitter, Tumbler(aside of our own different sets of real worlds), where image creation and branding are everything and far from reality. It should be good news for folks like us who are born with a disability. We can be and create the personality we wish and desire to be by branding ourselves and creating new rules in this new liberal democratized age, which is shaping up and thriving with the help of technology. The difference is just that our branding is our ’NORMALCY’.

In this fast-paced new age world where we are constantly bombarded with images and information and where the boundaries between being human are blurred due to invasive nature of high tech gadgets,  robots taking over human jobs and microchips, as well as prosthetics, becoming an extension of our body, I struggle to define ‘What it is to be Human?’ and what are the factors that define ‘Normalcy’. My aim is not to focus on the conundrums or just point out the flaws in our society but, to draw attention to the changing dynamics of our world and adapting to it to bring substantial positive change in the way we think about our body and accept differences.

I would like to start by walking you through my personal journey briefly. India is a country of rich cultural and religious diversity. From North India to South and from the west coast to the east, every state is like a country in its own. There are about 22 different official languages. The way that a disabled person or any person who is different than the normative body differs based on the cultural community they are part of and the family they are born in. I was born in New Delhi, the national capital. New Delhi is a very cosmopolitan city. However, I really stood out. Most people in the community whether it was my school or my neighborhood were not aware of my condition and what it entails. Many of the teachers in my school were familiar with my condition as my elder sister also has albinism but at the time my elder sister was growing up, my parents were living and working in Hyderabad which is in Southwestern part of India.

People with albinism often are prey to social isolation and stigma. It often depends on the place of birth and the experience growing up. As I was born in India, I have struggled my entire life to feel a part of the Indian community. There are many taboos culturally that prevent me from being socially accepted as I have 'defective genes'. There are several ways that I have been discriminated against based on my vision, my looks and my biological disposition. However, this is all part of my life and how it has structured and is normal for me and has only added to my perspective and outlook towards life. The point worth noting is the idea of normalization for me is accepting who I am whereas in the society where I grew up the idea of normalization is the idea of medical standardization of the body prevalent in the society.

My parents were very loving and accepting of my condition and so was my extended family. But when I was younger, I felt very isolated in school. Until sixth grade, I did not have any friend in school. Kids used to come up to me and tell me I will normalize soon as told to them by their parents. I used to play a lot with neighborhood kids but often times I was made the 'GHOST' in the games. Many kids also used to get scared of me. At first one may think that kids can say things that may be inappropriate because they are not mature. But on deeper thought kids are fed information through the elders around them. Is it right to encourage kids to think whatever they perceive? As adults, we are responsible for creating inclusion right from the start.

Indian women have a very specific look and standard of beauty. They have thick black hair, sharp eyebrows, black or dark brown eyes, and wheatish complexion. I was never anywhere close to that standard, therefore, growing up I fantasized about having dark hair, dark eyes, and eyebrows. I also did color my hair brown and color my eyebrows for about 12 years. It started off as a playful accident in college. I noticed that people were friendlier to me with my new appearance and so it quickly became part of my identity. It is not that there are no albino people in India. As a matter of fact, every one in three thousand people in India has albinism. Due to the lack of diverse representation in the country the idealization and standard of beauty are based on popular media. Everything from cosmetics, products to clothes are based on popular demand due to the simple economics of demand and supply. Getting back to my natural appearance was far more challenging than I imagined as my last memory was that of people commenting on my looks rather than accepting me as I am.

Additionally, I have always had to prove my nationality while going to any national heritage sights such as monuments, forts, etc. As I don't look Indian and I can speak fluent English. When using public transport, I am asked personal questions often posed in a way that makes my condition seem like a disease. Growing up in a sheltered family, I did not quite understand the value of independence and making my own choices. In a country where family and social relationships are integrated in the culture through traditional norms; how can people with disabilities learn to be independent and function independently unless they are trained to think they have assets to offer are considered equals? I am privileged to have opportunities to study abroad and to learn to live independently which helped me accept myself.  It is true that self-confidence and self-belief has helped me form better relationships and tackle challenging situations, but I spent decades of my life trying to understand what my strengths are because the education systems are simply not structured to train those who are off the grid.

While I stood out of the crowd in India; the situation completely reversed in The United States. Here I found I am invisible so much so that my identity as a disabled person is questioned. While back home my folks feel that it is questionable to talk about my disability to prevent social rejection; in the US there are laws governed by the Americans with Disabilities Act which gives disabled people a right to keep their disability confidential. The system is created to prevent discrimination in the hiring process. The irony is that if there are laws to prevent discrimination then they must do so without putting a condition on disclosure. These laws are making the disabled person skeptical to share their condition freely even if they want to. If a disabled person chooses to share their disability publicly or to an employer, it makes them even more vulnerable. The employer questions the reason a potential employee for sharing and wonders about the severity of the condition. This increases doubts and the fear of the unknown prevents employers from hiring disabled employees. This constant push and pull of how much to share, when to share and whether to share is the most disabling aspect of the system. There is no one standard of normalcy in nature or in any living species. All are created uniquely then why is it so hard to accept disability as a mere identity category?

Additionally, another aspect of invisible disability is to prove the authenticity of my disabled experience. Sometimes I wonder if it is harder to have a less severe or non-apparent disability than to have one which is visible, so you don’t need to worry about sharing it. Which is better? In a world where being vulnerable is equitable to exposing weaknesses; how can we ever create acceptance for disabilities or the disabled community? After all the word itself creates such barriers in the minds of people that seeing it as a positive is incomprehensible for most people. People do not understand that rebranding the term after decades of ostracizing the disabled community is not going to change anything in fact it demeans and devalues the people who have accepted disability as their identity. Furthermore, if conditions like asthma and life-threatening diseases are acceptable and accommodated then why are terms such as ‘reasonable accommodations’ used to reference the adaptations disabled people need?

I don’t have answers to these questions. I believe no one does as every disabled person has their own subjective experience based on where they live, how they live, with whom they live, their nationality and religion. I do have questions that may serve as potential grounds to find substantial answers. One of the things I find important to investigate is, what is the most important need of the hour? Is it more important to fight for disability as an identity category or to fight for more access, accommodations, assistance and employment opportunities? Several disabilities that are more severe or life-threatening are at stake in these fights. What measures can be taken to educate the disabled communities that do not have access to basic needs? Above all,  when each one of us is nonstandard then why is standardization the norm of creating systems? Are there ways of creating more customizable systems? We live in an interdependent world where ecologies are interdependent for sustenance. How can we bridge the gap between the abled and the disabled world to create more sustainable environments for everyone?