People would rather get Cancer than be like Me

Picture of the author Sophie Trist in black and white

I stand with my sisters, all of us dressed in identical black pants, blue sorority t-shirts, and nude pumps. We sing our peppy welcome songs as two dozen potential new members, freshman girls who want to become part of Greek life at our small liberal arts university, file sedately into the room draped in pink and bronze. The second round of recruitment will focus on the sorority’s philanthropy. I tap my cane self-consciously as the door closes. Have any of the PNM’s noticed the way my prosthetic blue eyes don’t blink or move? The white cane in my hand? The hearing aid revealed by my pinned-up hair? I normally don’t think about my blindness in this way, but we’re all on display here.

A year ago, I was one of these freshmen seeking a sisterhood, a sense of belonging. Before coming to this school, I swore I would never join a sorority. My whole family is Greek, but I didn’t think the experience was for me until I met some sorority sisters at orientation. They made me feel like their friend, like maybe a blind girl wouldn’t be as out of place in the Greek world as pop culture had led me to believe.

After ten minutes of choreographed conversation, sisters and PNM’s alike sit down for a short speech from our director of philanthropy, who joined the sorority at the same time I did.

“As a sisterhood, we pride ourselves on doing good for others,” Ellie starts. “Our philanthropy assists the visually impaired. Our sight is something we take for granted, but for those who don’t have it, every day is a struggle. Our sorority has founded four schools for visually impaired children across our nation, and we’ve raised thousands of dollars for medical research into curing blindness. We cannot comprehend the suffering and darkness people who are blind face, but we can work to alleviate that pain.”

Ellie’s words are a sledgehammer blow to my chest. We’ve shared homework assignments, secret nicknames, jokes, and drunken, laughing nights. Do they really think I live every day in darkness and suffering? Do they think I’m faking my happiness, my love of life?

Let it go, Sophie, urges my inner pragmatist. But I know I will speak up, because I want my sisters to understand that being blind isn’t the apocalypse. Researching cures for blindness is all well and good, but it can’t happen at the expense of our dignity and our truth.

During a short break, I approach Ellie, locating her by the sound of her voice. “Hey, can I talk to you for a sec?” I ask, nervously wiping my sweaty hands on my pants. My smile feels way too big on my face, my cheeks almost aching. “I’m sure you didn’t intend this, but your philanthropy speech was really offensive. I don’t suffer because I’m blind. Society’s ideas about blindness are way more problematic than the fact that my eyes don’t work.”

“I’m sorry, Soph. Grace wrote that speech. We can ask her to change it,” Ellie says.

We find the chapter president, who has ten billion things to do, and Ellie stays silent while I give my spiel. Grace promises to change the wording. I walk away believing I’ve done my bit to help my sighted sisters work on their ableism.

But when the next batch of eager freshmen sits down to learn about our philanthropy, Ellie gives the exact same speech. I imagine storming out of the room in protest, but I just sit there and smile in knife-sharp silence. Questions scratch at me like thorns. Am I being an Overly Sensitive Blind Girl? Did I come off as too aggressive when I talked to Ellie and Grace? I do what society has trained women, especially disabled women, to do: assume that the fault lies with how I raised the issue, not the response of those in power. The world may think blind people live in eternal darkness and suffering, but ironically, it wants to see happy, nonthreatening, nonchallenging blind people. The world wants  blind people who never complain when something is inaccessible, blind people who smile through the hurt when someone says something offensive and say, “Aw, I know he meant well. She didn’t know any better.” And while those things may be true, they don’t invalidate the hurt. Intention is important, but it’s not everything.

In that room surrounded by girls who chose me to be one of them, I feel utterly alone. For them, there is a line in the sand, a line between Us and Those Poor Blind People We Help. Because I am a relatively privileged and successful college student, I can be embraced without becoming an object of abject pity. But what they fail to grasp in this moment is that I blur the line. I am one of Those Blind People, and I am proud to be so. I realize in this moment that you cannot effectively serve an individual or a group without knowing their truth, and somewhere between my own recruitment last year and this philanthropy speech, my truth got lost.

I’m a stranger in my own sisterhood. By the end of that year, I am no longer part of that sisterhood. The blatant ableism of that recruitment speech isn’t the only thing that drives me away, but it looms large as I submit my resignation of membership.

During a conversation about reproductive rights, someone tells me I should support abortion on demand because I don’t want other disabled children to suffer like I do. When I go out with sighted friends, the server often asks, “What will she have this evening?” as if I’m incapable of ordering for myself. I enter a local tea shop with my best friend, and the proprietor exclaims, “I see you’ve got a new caregiver!” I wait, usually in vain, for the diversity and inclusion forums at my university to talk about disability justice. Racial justice, economic justice, climate justice—those are always on the table, but my kind of justice usually gets left out. In a world where so much information is communicated through visual images, I occasionally feel like an afterthought, if I’m even a thought at all.

Sometimes, if I have the energy and if it’s a person I’m likely to interact with more than once, I speak up and gently try to educate. Most of the time, I just smile and move on with my day. But I don’t forget. These misconceptions, these value judgments about my blind life, stay with me.

According to a poll conducted by Disaboom, a website run by people with disabilities, 52% of Americans would rather die than live with a severe disability. A 2016 Johns Hopkins survey reveals that Americans fear going blind more than heart disease, memory loss, or cancer. People would rather get cancer than be like me: a twenty-four-year-old writer and successful college graduate who reads, travels, swims, sings, hangs out with friends, has fallen in love and back out again, and generally lives life to the fullest. I carry this with me each day I breathe. I can educate. I can live by example. But despite the joy I take in living as a blind woman, I still wish people understood. I wish the girls who were my sisters had understood.

  1. I fear we will always wear our “otherness” first to the people without disabilities, in a world where “but I don’t think of you as disabled” is the biggest compliment they can give. Praise that denies our very existence. I think disability is one thing people fear so highly because it can happen to them at any moment. I’ve said with great pride, my people take ANYBODY ~ old, young, rich, poor, fat, thin, artistic or a bean counter, a nice person and a not nice person. No one wakes up a different race, color, or gender than they went to bed and that’s not true of disability. Until they can see that disability is a natural way of living, that we have they same needs as anyone else, its just how we meet our needs that may be different, we will always wear our “otherness” first to the people without disabilities.

  2. Thanks Sophie for sharing this. I used to experience at giving voluntarily some classes to blind high school students. I really feel blind people living normal as sighted people. They are able to do anything. Some are having misconception that blind people are suffering and need pitiness or special treatment. But from what I see is that the blinds are proud the way they are and we should understand to treat them appropriately. Everyone not only disables people have same needs as another. Yes we all need love, caring and understanding and no one wants to feel they are the others responsibility. I really feel the way people treat different people in prejudging way that may caused more misunderstanding and a wound to another feeling too. Well, I support the second story initiative. Our stories need to be told and heard. Thank you

  3. Dear Sophie,
    As always I am so proud to be part of your family. Thank you for writing this. Your words are so important, your decisions indicative of the strong, capable, normal young woman you are. People always fear the unknown and fail to understand how toxic charity can be. My cousin’s daughter in Sweden is totally deaf. She is 41 now and has never lost her way on her journey, although people have unwittingly compromised her so very many times. She is working, married to a fabulous guy, raising two great sons and doing the double work of living her life and teaching people to let her live her life and to recognize her inner voice, her capabilities, her joy in life and her compassion for others. You, too, are living this double life. You, too, will always be student and teacher. Hopefully, your “ sisters” learned something and that we all learn to step over our divides and recognize the unifying joy in living that we should all have. Love you so much but even more so , I love who you are! Aunt Anne

  4. Well said, Sophie, and thanks for sharing. We can all benefit from hearing from your perspective. I have so much respect for you. Too bad your Sisters didn’t have you write & present that night. Think how powerful & enlightening that would have been. Their loss all the way around!

  5. Sophie, you have many gifts. The greatest of these gifts is your ability to express yourself eloquently, your ability to think high-level thoughts quickly, and your ability to comprehend and perceive situations with exceptional awareness. I think what happened was offensive and inconsiderate. However, I think you let your French heritage with the fast realization and quick temper get the best of you when you resigned. This very uncomfortable situation was a moment for you to teach them how misguided they are. Their inconsiderate comments and thoughts show their immaturity and lack of situational awareness.

    The thing you need to know is that many other people go through moments like these. You are not alone in your feelings or reactions. Furthermore, never let other people’s opinions define you. Know your truth.

    Use that difficult moment to motivate you in showing them that they are laboring under the wrong assumptions. Use your god given gifts and lead them to different realizations through how you successfully live your life.

    By the way, I too have reacted in the same way you did at offensive and condescending comments that were directed at me. I cut my relationship with those people because I felt that the relationship was toxic. What I have learned is that I should not change who I am and what I want in response to their untrue comments. I recommend you do the same.

    1. Thank you for your support, Judy. I know other people, especially disabled people, have had similar or much worse experiences. And as I said in the essay, that incident wasn’t the only or even primary reason I resigned; I became increasingly involved in another organization that ultimately meant more to me, and I didn’t feel like I could continue committing time and finances to the sorority. Several of the sisters reached out to me after this essay was published thanking me for educating them and giving them the perspective to confront their own unconscious ableism.

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