In-Between

By Sugandha Gupta

For those who are reading my article for the first time, namaste (hello). I am Sugandha Gupta. I am a fiber artist, designer, maker, disability advocate, and educator. Living at intersections of disability, ethnicity, and identity, I find myself striving to form authentic connections with others, and create awareness about disabilities as strengths and new opportunities to experience the world from a different lens. My own adversity whether it's social rejection, discrimination, or struggle for access,  has led me to have greater empathy, compassion, and a desire to form strong bonds with others.

Born with a rare genetic condition called Albinism, I do not have melanin in my skin eyes, and hair. As a result of this condition, I am also legally blind, or in other words, what a sighted person might see from 200 feet, I would be able to see from 20 feet. This condition also affects my eyes and vision in other ways. I have Nystagmus or constant eye movement, poor depth perception, and poor peripheral vision. I am also extremely light-sensitive or photophobic as my eyes can not filter light.

Albinism is also intrinsically tied to my identity. Growing up in a culturally rich country like India without a cultural identity made me stand out from the crowd. I was often a spectacle of amusement, fascination, and even fear. People often had the urge to touch me when they saw me, as if I was a specimen in a museum. I would often be called names like "Suraj-mikhi" or having a face like sun or would hear remarks like "yeh dekho angrej" which translates to look at this foreigner or "kitni white hai, powder lagaya hai kya?" meaning, She is so white, maybe she puts talcum powder every day. I yearned to look like my mother who does not have Albinism. Growing up I fantasized about having black hair and eyes, so that I could look beautiful and be part of the community I grew up in.

My unofficial design journey started from the time I was in school. Having no clue as to what was being scribbled on the blackboard even from the front bench and not being fast enough to get to the page being discussed in the classroom, my solution to keep up with everyone else was to work harder and study the lesson with a tutor in advance. (not my smartest solution)

I was so privIlEged to have fine art be taught in my high school. When drawing still life I would go close to the objects being drawn with my magnifying glass, observe all the details, return to my seat and draw from memory. This dedication to art was my gateway to the National Institute of Design, India, as my art teacher saw potential in me and directed me to apply there. 

My journey in design was a rollercoaster ride as I was the only visually impaired person in my college who was pursuing a career in visual arts and design. Often my frustration was that I just couldn't find solutions to gain access to learning the tools I needed to excel in my career as a textile designer. But one of my professors, prof. Immanuel Suresh, saw me struggling. He was teaching color theory at the time and it was next to impossible for me to use the steel ruler efficiently to measure and cut equal color chips for my color wheel. Seeing me struggle and cut myself a number of times, he suggested, " why don't you design a cardboard ruler and make the markings with a black pen. This way you won't have to measure over and over and won't have to look at the reflective steel surface." What a simple and brilliant idea, but it was really daunting for me at the time. Over time as he counseled me and heard me, I learned that I could create access for myself as long as I found a way to create my own approach to learning what I needed to learn. This idea has really shaped who I am today. Someone who truly believes that what I am born with is a blessing, not a disadvantage. It helps me see things differently. 

Something that I practice now as an artist and an educator is to live and practice what I have learned. I share this with others as much as I can. I have created a body of work that is multi-sensory, so that everyone irrespective of their lack of a particular sense can engage with my art independently. I am also promoting the idea that knowledge is gained in many different ways, not just through sight. 

Over the years as I have lived in the US, I have found new and interesting ways to view my experiences and my identity. Coming to grad school at SCAD for my MFA was a blessing. I practiced what I learned in my undergrad and I gained so much knowledge about my strengths that lie in my sense of touch and sound through praxis. I learned about other disabled artists through research who have had a similar or even more adverse journey like Judith Scott. She was born with down syndrome and was institutionalized for 35 years as she was labeled as "too retarded" . But with support and encouragement from her twin sister and the Creative Growth Art center community, she produced fiber sculptures that became her way of communication and got her much acclaim in the contemporary art world. I found many other such stories of disabled artists, designers, and professionals who broke the access barriers through their ingenuity, will, and perseverance and found a way to shine their light on the world. 

Now my journey has taken a new turn. I am now with a new mission to educate students to love who they are, and share who they are with pride. Society tells us to suppress our difference, it is keeping us all from becoming connected and cooperative with each other. Society doesn't recognize disability as a unique and awesome experience. It's keeping millions of disabled people in the dark. They are living their lives thinking they can't do more and those who do more, are still shackled by access barriers or barriers created by social norms.

Something that I have learned about myself recently is that I am living in the in-between. I am too sighted for the blind and often looked down upon, even questioned for being sighted enough by the sighted. It took me so long to love myself,  accept myself and learn to work with what I have. Now I have to find a way to not get bogged down by the invisibility of my disability in my new reality as a person living in New York. What I have learned is that I have to be enough for myself. I might be too sighted for someone or might have much less than someone, but ultimately I know my reality and live with it. Justifying myself to anyone isn't going to give me peace or joy. It does get to me from time to time, but I am applying my professor's rule here and asking myself how I can re-think my situation as an in-betweener and make the most of it. Maybe this is helping me empathize with two different worlds one of the sighted and one of the blind. I want to find commonalities between these two worlds and bridge the divide and the anguish. The answer to this is being vulnerable, being connected and opening up to each other. Using our strengths and putting them out in the world is the only way we can bring about our ingenuity and true equity in society. Until we stop looking at others' seeming weaknesses and trying to monetize them for our own good, we will never have an equal playing field and the divide will prevail. 

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?

The gleaming beauty of light reflecting in the water. The value of the picture is in the beautiful colors from my perspective.

Dear friends, readers, and fellow bloggers,

Apologies for being away for so long. I am trying to catch up once again now that life and circumstances are slowly getting into the correct perspective. Today's post is about caring for others and being kind to others not for any other reason but the most basic, connection and forming a relationship with species of our own kind, Humans. In this fast-paced, technology-driven, materialistic world we often need to label relationships to be able to make sense of what we need to put into it, right? When was the last time you found yourself doing something for someone out of pure compassion, kindness or sincere consideration? You want to do those things but you worry about what people will think in fact even what might the receiver think, right? Is there a thing like a sincere consideration I wonder? In a world where everyone is juggling multiple jobs, chores, complex emotions, an abundance of information, who has the time for compassion. You suffice with giving your seat to an elderly woman in the subway or thinking that you are being kind if you help a blind man cross the street. We often do things that may not even be desired by someone to make our lives feel better. How did we get here? We are a part of the larger ecosystem that has so much diversity and room for every kind of variety of species. When did we start calculating which species is the best or on top of the hierarchy? Why do we feel it's important to know that we are on top of the food chain?
What good have we done by being on top of the food chain anyway? We have exploited the earth and its resources to an extent that our own species are endangered. To sum it up Human beings are selfish and only live in a pretense of trying to be better when we are not even close to trying.

The Science of Touching and Feeling | David Linden | TEDxUNC

This past one year in Savannah  has been a trans-formative journey with its highs and lows. My outlook has broadened and I have matured reasonably. One of the things that still concerns me is the social politics that surrounds me in my day to day life. I grew up in a simple and close knit family. One with laughter and joy and several upsets. As an albino kid I stood out from all the other kids but, eventually by high school, I managed to pull my self together and got a great group of friends. My passion for arts grew and I learnt that if I do what I love then it wont feel like work. I was fortunate that my parents never pressured me to pursue a career which I did not enjoy and I was loved for who I was. The only thing I did not learn is to be street smart. To distance and tackle people who are demeaning more tactfully. I had some unfortunate experiences too, where I faced narcissistic individuals who I had no escape from, for a while. As much as it was tormenting I realized how important it was to be empathetic and humble. I am grateful for this day and time where Iam being appreciated for my efforts. I wonder how we are in an age where it is so hard to find solace in each other. Why are we not empathetic and why is being polite and affectionate considered a sign of weakness? Why is it so hard to form bonds? Why do we fear showing affection and sharing compassion? In a way I am happy to be out of the street smart lot as it is a competitive world out there. Keeping up with the politics and plotting is hard. But what am I missing? I just wish to share the love and compassion I have, the question is does anyone care for it? Is it such a sad world that I must only reserve my emotions for my beloved and family? Isn't it unfortunate that we have to curb what comes naturally to us? 

I recently participated in the American Crafts Council Retail Show through SCAD Fibers in Baltimore. I showcased my sculpted scarves , elevating the sense of touch as a way of experiencing objects. This experience brought to life a thought that I have been carrying for over a year. The idea that we are always complaining about what we don't have. The fast paced life that we live in dominated by imagery of the fetishistic ideal life that everyone portrays on social media, takes our personality and reality and bring out a disappointment and craving for something that does not even exist. My scarves were received very well and people bought my story. I have also transformed into a maker and a craftsman in this process. Going through a major change of feelings and emotions. There is so much I can do with my vision, my imperfection is my strength and this realization came through a humble, simple and high spirited artist Judith Scott. She was a fiber artist who worked obsessively on her wrapped and twined fiber sculptures. Her sculptures are exhibited in all major museums of the world today and even though she is no more, she touched my heart through her art. She transformed me and now I am carrying her message along with her own soft sculptures that tell her untold story. Her sculptures exemplify the power in optimism and the potential of the human body and mind. She was born with down syndrome and was deaf and mute and was institutionalized for 35 years. Her twin sister entwined to her soul enrolled her in Creative Growth art center at age 43. She accidentally started producing her sculptures after viewing a fiber artist's workshop and found her true calling, her medium and passion. I too aim to emphasize the use of our body's senses not just sight, but smell, taste, sound and touch. I find that there is so much in my body that I am gifted with, yet to be explored.