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.