What does it mean to be multi-marginalized? What’s the best way to be a disability ally? How does it feel to be completely blind from birth, as opposed to losing one’s sight gradually? Can hard of hearing individuals appreciate music? Should we look out for individuals with disabilities by offering them easy choices? If you’ve had these questions but didn’t know who to ask, you’ve come to the right place.
Having been born and brought up as an individual with profound oral deafness — the name for individuals who choose to wear hearing aids to hear and talk, and assimilate into the hearing population — I was raised with the perspective that disability was a “problem.” This way of thinking aligns with the medical model of disability, which perceives disability as a missing part of the body which must be repaired so that the body becomes “normal,” according to psychologist Rhoda Olkin. Family, friends, acquaintances and strangers alike would inquire anxiously of my parents, “Can Reshma become normal?” and look at me with pity when they realize the truth.
When growing up, I often asked my parents, “Why am I different?” The stock answer given by parents and special education teachers was, “God made you special.” India is a deeply religious and secular country. A decade ago, in 2015, the Indian government announced that people with disabilities would have a special name: “Divgangjan,” meaning “divine body” in Hindi. The Economic Times reported that Prime Minister Narendra Modi stated that people who do not have a limb have divine powers — which, of course, we don’t. This statement reflects the moral model of disability, where a person with a disability is perceived to be chosen by some higher power or divinity, a sentiment which is echoed across India and around the world.
To expand my views on the models of disability, I traveled across the world to do a master’s course in the Global Inclusion and Social Development program at UMass Boston. It was here that I learnt about the social model of disability – where the individual is regarded as disabled not by their body, but by the environment, a model popularized by disability activist Mike Oliver. In this program, I developed a critical understanding of not just different models of disability, but also social inequalities, power dynamics and oppressive systems, enabling me to analyze and respect diversity and intersectionality, work towards creating safe spaces, and empower my community to explore choices and develop their own sense of agency.
This summer, I had the privilege of attending the Ask Me Fair, a “living library” initiative which aimed “to educate people about intersecting identities and allow them to ask questions without judgement in a safe space,” according to co-creator Zoe. It was organized by Think Outside the Vox and Open Door Theater at Sargent Memorial Library in Boxborough. The concept of a living library is where an individual, like a book, has a story to tell, and invites all to a discussion to exchange thoughts, concerns and experiences. The presenters were a diverse group of individuals who had intersecting disabilities, identities and cultural and professional experiences.
I loved the concept of bringing individuals and their lived experiences together with curious and open-minded acquaintances. I saw how potential allies were eased into the community with a poignant introduction on how the Ask Me Fair originated and earnest, straightforward and respectful question-and-answer sessions among small groups. I saw what it meant to make a public event inclusive — there were American Sign Language interpreters, closed captions, audio descriptions, sighted guides and Braille materials, wheelchair-accessible entrances and bathrooms, and free refreshments. I saw how we could ease the discomfort of asking potentially sensitive queries by using a “question jar’”containing questions prepared beforehand by the presenters, which was provided to the attendees.
When I met Jae, I learned what it is like to be confident and proud as a visibly multi-marginalized individual, happy to talk about their experiences. In school, Jae, who identifies as nonbinary, neurodivergent and Asian-American, always felt that they did not fit in, and tried to conform what people wanted them to be — but it was never enough. At around the same time, Jae found Instagram, and credits the online community for “saving their life.” The internet introduced them to new communities and connected them with people who they otherwise would never have met.
However, Jae suggested, “The minimum age to join social media must be increased from 13 to 16 because the Internet is no longer a safe place for young people.” They recounted their experiences with online bullying, saying, “I have gotten every sort of hate mail you could possibly imagine. Now, when I get hate mail, I’m just, like, ‘Wow. Can you be more creative? There are a million ways to insult someone, and you’re using the same ones.’”
Drawing on their experience of seeing practically no queer representation growing up, Jae resolved to build a career in art direction so that they could advocate for diversity and positive representation of minority groups in media. As an actor, illustrator, costume designer, and one of the youngest art directors in the industry, Jae pays it forward by hiring and collaborating with marginalized artists from all over the world.
The first thing that I noticed about Evvy is that she has rainbow-colored spikes on her wheelchair constructed from kids’ straws. Creativity, literally, has no bounds. Evvy, who identifies as a loud and proud autistic, queer, trans and disability activist, started advocacy young. She established her high school’s Gender and Sexuality Alliance, and went on to start the Disabled Student Group in college, which she plans weekend social activities for. An English major at Skidmore College, Evvy said, “Skidmore’s student gathering spaces are not accessible by design. There were a lot of social events where my friends and I felt left out. By the second semester, our student group had become so well-known that other clubs started asking us how they could make their events accessible.”
Drawing from her role as an advocate, Evvy recommended social media as a tool for learning disability stories. She believes that “social media is a resource that many people are sleeping on because they say that it’s a big bad monster,” but that it is “worth every bad part of social media to have access to that [diverse] group of people.” She encouraged individuals to find people who are different from them on social media because it makes their social media experience worth it.
Kwaku shows me, an individual with deafness who loves communicating with the written word, what it means to use one’s hearing mindfully in an immersive environment. Born with congenital glaucoma, Kwaku, a blind musician and audio describer, experienced a gradual loss of vision over time. An immigrant from Ghana who moved to Hartford, Connecticut, at the age of six, he remembers not having perfect vision as a child, but he could read, write, use a computer and run around with other children. Kwaku reflected, “It’s almost easier to be born completely blind, because it was difficult growing up while constantly losing my vision and adjusting to how people react and accepting who I am, as an individual.”
To educate people about blind culture, the Berklee College of Music graduate used a novel approach with his capstone project ‘Beyond the Blackbox.’ Kwaku aimed to “level the playing field in terms of how I assess shows and how I engage with the world” by presenting a compilation of his all-original Afro-fusion spoken word performances in a black box theater. The rendition was set in the dark, where the musicians and audience could not see each other.
Kwaku explained, “I aim to show a model of what it feels like to be both left in and left out. Being left in is the experience of people saying, ‘Oh, you’re a blind individual’ and that’s it. Being left out is the experience of being left out in a lot of experiences and spaces. I wanted people to leave with the empathy and awareness of learning how to make our spaces more inclusive.” While Kwaku currently mentors blind and low-vision youth and writes poetry with the Boston Blackseed Writers, he is looking forward to teaching at a charter school in Hyde Park, Massachusetts.
Meeting Via helped me dispel the notion that hard-of-hearing individuals cannot appreciate the nuances of music. Via, who has Dominican heritage, said that her passions for music and disability activism came together only after they moved to Boston four years ago, where she got to “meet more artists with disabilities and see accessibility and arts being in the same room.”
“Music is a very visual experience. I could watch the conductor or learn the tactile notes of a saxophone or violin. Music felt like math. Once I got the formula down, the expression would come later,” Via said.
Going forward, the producer, artist and activist aims to learn from various initiatives like the Especially for Me event series at the Discovery Museum, which features dedicated hours, free admission and increased sensory-friendly access for families with disabilities. In her role as an access coordinator, she observes, takes notes, asks questions at various events, then applies what she learns and shares it with other people. Via, who is also the marketing and communications manager for Think Outside the Vox, cares about people “a little too much” and loves advocating for people in public spaces, social groups, and corporate settings. She said, “There’s a lot of weight to advocating and protecting people when you yourself are disabled and belong to these communities and cultures.”
I learned the meaning of perseverance from Dr. Mona Minkara. Diagnosed at the age of seven with macular degeneration that led to her losing her vision, Minkara was put into lower-level classes and told not to do science, although she loved the subject. Finally, in the 10th grade, Minkara put her foot down and took advanced biology classes despite being told that she was certain to fail. Not only did she pass, but she ended up getting the highest grade in the class. She reminisced, “The teacher apologized to me. I’ll never forget this experience because it completely shifted my perception of myself.”
However, Minkara still carried internalized ableism for years until one defining moment – when a professor whom she had not reached out to offered her a job, saying that it was because she thought about things differently and was going to solve problems no one else had solved. Minkara said, “He was an amazing advisor, and kept standards high but understood that because I was blind, I would take extra time or do things differently. But I became a great scientist because of him.” As a bioengineering professor who wants to see more individuals with disabilities in science, she is working towards that goal by creating a comprehensive webpage describing all the tools that she uses, such as text-to-speech software, mobility aids and office management tools, among others. Minkara hopes that she will encourage other individuals with blindness or visual impairments to take up science.
As we understand the nuances of disability and intersecting identities from the experiences of such wonderful people, I am indebted to Think Outside the Vox and Open Door Theater. Thanks to thoughtful and sensitive initiatives like this one, we can learn from the expertise of diverse individuals, confront our own implicit and explicit biases and assumptions, unlearn and relearn how we perceive the world, and continuously listen, adjust and grow while advocating for inclusion across all forms of diversity.