Through my camera’s viewfinder, I could scarcely make out someone signing ‘I love you’ to me in ASL among the throngs of supporters at New Haven’s climate rally in September 2019. I put my camera down and saw Elaine Kolb beaming as she approached me, a faint squeak audible as her power chair rolled across the New Haven Green. She had a ‘BLACK LIVES MATTER’ button on her shirt, a rainbow-printed bandana tied around her neck, peace sign necklaces to gift to passers-by, and a sticker reading ‘DISABLED AND PROUD’ on the back of her wheelchair.
I figured she must have noticed me pointing the camera in her general direction and decided to pose for a photo with the ‘I love you’. After a brief self-introduction, she began talking about her experience living with a disability. “There’ve been many times when people—total strangers—came up to me and asked, ‘Were you born that way?’” she said to me. I wasn’t sure how to respond to her sharing something so intimate even though we’d just met. She broke my silence and carried on, “You know what my reply to them is? ‘Well, actually no. When I was born, I was a lot smaller!’” She burst loudly into laughter, and I chuckled politely. I couldn’t help but wonder how she confessed a hard truth and laughed afterward, combatting insensitivity with humor.
She reached into a purple and orange haversack and handed me a sheet of freshly printed song lyrics. I asked if she had written them, and she pulled out a whole book of songs she authored. She sang one of them to me. Her voice was beautiful—soulful and resounding. Elaine flipped to her biography in the songbook and handed it to me. I skimmed through it, but found myself re-reading one sentence: “In September 1977, Elaine was stabbed in the back by a mugger on the street, resulting in a spinal cord injury.” She was 28 years old.
Elaine grew up watching civil rights demonstrators on television in the nineteen-fifties and nineteen-sixties. “I always admired the ones that were willing to risk great things for positive principles that would help people… And so part of it was just as soon as I had a chance to do it, I started doing it. It seemed [like] a natural thing to me.”
In high school, Elaine gave a speech against the Vietnam War; in college, she directed her school’s volunteer program and helped the new Black Student Union organize a Black arts and music festival. She’s since participated in demonstrations and written dozens of songs about climate change, women’s rights, disability, and more. She aptly describes herself as “a disability and diversity rights artist/activist, singer-songwriter, performer, and grass-roots organizer.” (She also describes herself as “a fat, old, ruddy-white dyke, driving a 6-wheeled power wheelchair, flying a rainbow flag, with a squeaky wheel.”)
Elaine has been arrested 27 times in the course of her 53 years of activism work—including once with the new Poor People’s Campaign – A National Call for Moral Revival. Mostly, she practices non-violent, civil disobedience with the American Disabled for Attendant Programs Today (ADAPT) and Not Dead Yet. In 2017, she was arrested along with four other disability rights activists for refusing to vacate the governor’s office in Hartford, in protest of budget cuts affecting communities in need—including the disabled. She was also arrested several times in the struggle to get the Americans with Disabilities Act (ADA) passed. It was thanks to the ADA that disability access routes were installed at Savin Rock Park, where we met for our interviews.
Not Dead Yet fights against assisted suicide for disabled persons. While people on one side of the debate see assisted suicide as a right and exercise of patient autonomy, most disability rights advocates see it as a deadly form of discrimination. Their work combats the manifestations of what Elaine and other disability rights activists call disabiliphobia—the fear of disability expressed by the disrespect for, prejudice against, and distancing from people with disability. Elaine explains that disability is the only minority that anybody can join at any moment, whether through illness or accident. “Most non-disabled people have a really difficult time because of their fear of becoming disabled themselves.”
This fear has led others to say hurtful things to Elaine. “People will say to me, ‘Oh Elaine you’re so amazing, you’re so brave! You go out there and do everything, and if I was like you, I’d rather be dead.’ They think they’re complimenting me that I’m so brave, that they’d rather be dead than be me? This is not a compliment!” She laughs in exasperation, then alludes to the assisted suicide of disabled people, “This is why so many of our people get dead!”
At this point, I start to feel a little uncomfortable—this fear of life with a disability has crossed my mind before. We are sitting in Jimmie’s Restaurant, and it’s crowded. I take an anxious sip of my latte and avert my gaze, watching the other customers eating their seafood platters and burgers instead of looking at Elaine. But she admits she once had this fear, too: “I did not understand and appreciate how much of my identity was tied up in my physical capacity and how deeply I feared having a physical disability where I couldn’t run… once I couldn’t run anymore, I really was more vulnerable.” Recounting the struggles she faced adapting to the injury, she shares, “I had to also rebuild a way of being confident and being able to travel in the world by myself… when you have a visible, obvious disability, it’s like you have a flashing neon sign on your forehead that says, ‘Easy Victim! Come and get it!’” I think back to that image of her when we first met, with her rainbow flag and scarf and loud stickers and buttons (and she’s always dressed that way). She sure had confidence, but maybe it was out of necessity.
Despite her accomplishments, Elaine is still hard on herself. “I feel guilty that I haven’t done more. And I’ve been a compulsive overachiever…with this deep-seated sense of guilt and shame that I deserve to be punished. Whatever recognition I received I would have to find a way to punish myself to counterbalance it.”
She tears up slightly as she says this, before laughing loudly again—exactly as she did when we first met. “This is very complicated!” I think back to how she told me she experienced her first hysterical outburst at age twelve, yelling between her sobs, “I hate my mind!” Her teacher then, Ms. Otruba, sat and cried with her. “I don’t know if I would still be here except that she cried with me and she said, ‘Elaine, you have a beautiful mind.’”
“I can point to certain things in my life, that without them, I don’t know how I could have survived… I was given these gifts, or these people appeared at just the right time or things just happened a certain way and you know, a slight variation and I would have been gone; I would have just been lost.” Specifically about her stabbing, she tells me, “as bad as it was, it was as good as it could be.”
I’m almost relieved by how much Elaine has to say. After all, how do you respond to someone who confesses after having met you two weeks ago that, as a troubled teen, she might have spiraled into drug use if then she had access to heavy drugs; who was severely ostracized upon coming out as a lesbian in the 1970s; who survived two traumatic rapes; who holds your hand while recounting the deaths of partners, family and friends; who was stabbed half a block from her home at age 28? I couldn’t find the right words to return her vulnerability and strength.
Two interviews later, I knew so much more about Elaine. She deliberately keeps her wheel squeaky because of a promise she made to a visually impaired friend (who could place her more easily in space). She has two cats named Izzy and Bonnie-boy who “help lessen tactile deprivation.” She is a woman of confidence coupled with a sense of inadequacy; loudness coupled with silence; profound loss coupled with a sense of being blessed.
The more Elaine shared with me, the more she asked about me in return. I told her about my parents and older brother back home, about how I aspired to be an OB/GYN catering to the healthcare needs of marginalized populations, and about what I loved to do, like embroidery and theatre. Hearing this, Elaine invited me to participate in a community theatre piece about disability and difference with her and four others. It was the second installment of the Hear My Soul Speak series—a set of plays devised around various themes of social justice, produced by the Elm Shakespeare Company. Despite having to miss rock climbing practices in order to attend rehearsals, I agreed to participate—something just told me it’d be worth it.
And it was. We performed a series of scenes depicting how the disabled are commonly discriminated against, and offered do’s and don’ts on interacting with the disabled. To top things off, we led the crowd in a song that Elaine wrote in 1981 (while on a Fulbright scholarship as part of the United Nations International Year of Disabled Persons) about the institutionalization of the disabled. Following the performance, Elaine and I met for meals, shared an hour-long phone call, and exchanged dozens of emails. Over time, that stranger I encountered on the New Haven Green became my trusted confidante and greatest giver of advice. She walked me through the doubts I was having about myself at school, guided me through my then long-distance relationship, and never failed to remind me to wear layers (something I wasn’t at all used to, coming from equatorial Singapore). She had predicted it in one of her first emails to me, dated October 1, 2019: “while I am old enough to be your grandma, I feel like we are sisters ;-)”.
When Elaine came to watch one of my theatre productions in February 2020, I teared up when I saw her. She sat right in front of the stage (of course), and after the performance, I proudly introduced her to all my friends there as “my New Haven Grandma.” She told me once that she was looking for a young person to build a connection with, and just as well, I had been searching for a deeper relationship with someone significantly senior to me. Last year, my aunt passed away three months after we grew close. Since the day we met, Elaine has reminded me of my late aunt.
Elaine and I thought we’d share many more meals before my departure from the United States in May, when my year-long visiting program at Yale would end. But COVID-19 washed up on American shores, and my plans changed dramatically. I had to return home two months earlier than anticipated. I hastily typed an email on a Friday night asking to meet her on Sunday. I was anxious about seeing her, since she was turning 71 this year and the coronavirus disproportionately affects older people. We decided to compromise and meet as soon as possible to minimize the chances of me contracting the disease beforehand. This time, she invited me to her home. “Mi casa su casa,” she replied on Saturday, “YOU are my whole agenda tomorrow.”
She warned me prior to our meeting that she had “inherited rat pack syndrome from both sides of her family.” And true enough—a corner of her apartment was stacked almost floor to ceiling with cardboard boxes and keepsakes. But Elaine knew her way around just fine, reaching into cardboard boxes and pulling out one memento after another. A printed scarf emerged from a box, a gift she received from three Vietnamese friends she met in Cuba in 1971 on the third Venceremos Brigade (which sends delegations to Cuba to work in solidarity with Cuban workers). We listened to her songs on the many CDs she had recorded, Elaine singing along live, almost perfectly on-key. As we sat in comfortable silence, I gazed around her apartment in admiration; it archived 71 years of a life well-lived, a life full of what Elaine calls “backhanded blessings.”
A sense of finality hung in the air throughout our meeting that day—I knew we’d have to say goodbye. We walked on the boardwalk at Savin Rock Park and sat out at the pier till our hands grew numb from the cold, rushing wind, as if doing so would make each minute longer. She treated me to an Irish Coffee and molten chocolate lava cake at Jimmie’s Restaurant and saw me off to my Uber after a long, bittersweet hug.
The last image we have of each other is us signing “I love you” as the car drove away.