Disabled-By-Design: Lowered Expectations (Part 1/3)
Roughly a year ago, I had the honor of meeting Lydia XZ Brown, an incredibly passionate disability advocate who is the Chairperson for the Massachusetts Developmental Disabilities Council, at a disability and career development event. One of the things they* said was “I am disabled by design, by other people’s lowered expectations of me… Being disabled is not about having something wrong with me, but I am disabled by the constraints of the design of the world in which I exist.”
Often the constraints of my world start where most people experience their greatest degree of encouragement and freedom: in education.
Let me tell you a secret. I had lived in New York City for over a decade and had no idea where NYU was, what it looked like, and certainly did not know anyone who had gone there. I actually heard about NYU from a classmates in high school who was the valedictorian when I asked her where she was applying to college.
“Hey Rudy, what’s your top choice school?”
“I have been thinking really hard about it, and I think I want to go to New York University.”
“Oh my god, no way! Me too!”
That whole week I looked up the address for NYU along with pictures, printed out the application, researched majors, scholarships, and famous alumni.
If Rudy was going to NYU, so was I!
A few weeks later I had a meeting set up with my college advisor, lets call her Mary**. I excitedly put together my SAT scores, my transcripts, and my personal statements. I had been waiting weeks to meet with Mary because I had done so much research on NYU and had fallen in love with the school even before I set foot on the campus. I like to joke it t was love at first referral.
I presented my folder to Mary and before I even opened my mouth, Mary looked at the NYU logo application and said, “Mariella, NYU is a reach school for you.”
I was flabbergasted.
My GPA and SAT scores were in the above-average range for the accepted students in NYU. I thought maybe she had made a mistake and said, “no Mary, look! My grades and scores would allow me to get in, I’m the type of student they accept in NYU.”
She looked at me and said, “Mariella, have you thought about applying to a smaller school, how about a school that has disability services already? Maybe even a deaf school like Gallaudet University*** or even a small school where you could get individual attention? You are thinking too big.”
To say I was angry is an understatement and looking back, I want to think she meant well.
This doesn’t justify the fact that Mary’s mindset was problematic. She created limitations for what I could achieve before even giving me a chance to decide that for myself. She perceived me, first and foremost, as a person with a disability. She did not see the drive and determination that allowed me to learn English as a second language after losing my hearing, she ignored how my SAT scores placed me in the 90th nationwide percentile, she overlooked the fact I had been on the honor roll since my first semester in high school in a mainstream school as the only student with hearing loss. She saw the disability and not the person, and she saw the disability as something that limited the person.
Mary refused to write me a letter of recommendation for NYU.
Thanks to the support of some incredible individuals like my speech therapist, Linda Kessler from the Center for Hearing and Communications, whose motto is “if you never ask the answer is always no,” I ended up applying anyway. I asked and I go a yes. And not only did I get in, I got in with an amazing scholarship and had the most amazing, fun, and incredible college experience.
Needless to say, my entire senior year of high school I wore my NYU sweater to school over my school uniform.
I wish I could tell you the Marys of my life stopped there, the truth is they didn’t.
The truth is, they haven’t.
I am disabled by design. I am not disabled by lack of will, drive, or desire. For me, attending NYU was a dream that I worked for while I was awake. The type of dream that you go to sleep at 3AM studying for.
In NYU I received a tremendous amount of support given the university’s colossal disability budget and knowledge when it came to disability accommodations and services, something that likely would not have happened had I gone to a smaller school with a smaller budget. I had disability service coordinators who advocated for me in classes, who told me about opportunities happening in the city, who stayed informed on disability services and always shared the most up-to-date resources with me. But beyond the disability office and the exceptional staff that made up the NYU Moses Center while I was a student, I had the advantage of having a world-class education with an expansive network of people and a brand name that has opened more doors than I care to admit.
Had I listened to Mary, I don’t think I would be where I am today. I highly doubt I would have access to the same opportunities I have had in the five years since graduating. And I surely wouldn’t be who I am today.
Am I disabled? Absolutely, but I am disabled in part by design. By other’s people’s lowered expectations of my abilities and potential. You know, I often think of a quote I read from Steve Carell that said, ‘Everyone said to Vincent van Gogh, ‘You can’t be a great painter, you only have one ear.’ And you know what he said? ‘I can’t hear you.’
And that’s just what I will keep saying to the Marys of my world when they tell me I’m thinking to big because of my hearing loss.
“I can’t hear you. Na na na na na.”
[stay tuned for Part 2]
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**not her real name
**Schools for the deaf are great choices for some people. Having grown up 100% mainstreamed and with spoken language, I didn’t feel a need to go to a Deaf school.
This was originally posted on Medium.