My Aunt Tiki and My Disability Rights Activism

RVF Fellow Dahlia Soussan at nine months old with her aunt Tiki, grandmother Sorele, and great-grandmother Tzipora. Via Dahlia Soussan

In the late 1940s, my great aunt Tikvah (Tiki) Weis z”l was born with Down Syndrome, a chromosomal condition that causes differences in and/or delay to one’s physical and intellectual development. At her birth, doctors advised my great-grandma Tzipora that Tiki’s chances of surviving infancy were nearly nonexistent.

At that time, children born with genetic differences were treated like lab rats by doctors fascinated with variations on what they saw as a finite human condition. The Willowbrook State School is an infamous example of institutional abuse toward people with disabilities in that era. My grandma told me that underneath her sister’s arm she found precise, unexplained scars that she assumes were made in a hospital. Before Down’s was officially diagnosed as a genetic disorder in 1959, the medical community concocted a range of dehumanizing theories, including one that babies with Down Syndrome were “blue-blooded.” They experimented on infants without parental consent to indulge these speculations.

This context is challenging. Remarkably, Tiki’s narrative transcends many of the obstacles set in her path. They didn't come at the expense of a full and well-lived life. In a family of four strong-minded, independent sisters, Tiki was the most exuberant. A musician whose favorite song was “California Dreaming,” she was the only one of the daughters who inherited, in earnest, my great-grandma’s musical talent. She played and read with me, bowled and painted, adored Hockey Night in Canada, and gave herself in full to the fluctuations of a vibrant family. Growing up in a space where Down’s was normalized, I didn’t harbor assumptions around congenital disability. I was about three or four when I first heard the term Down’s Syndrome, and I visualized the word like “donsyndroom,” phonetically, a hereditary trait comparable to red hair or tall height.

In fragments, I moved beyond my naiveté to understand the full reality people with disabilities face. Down’s is viewed by society through a microscope clouded by reductive lenses: stereotypes of certain appearance, childlikeness, and intellectual delay. It’s the West’s neurosis around older pregnancy and the infantilization running through some Down’s programming. While an increasingly conscious world ushers in wider recognition that people with disabilities are equally as thoughtful and valuable as those without disabilities, in every use of the “R”-word, in and beyond medical contexts, a speaker leverages the implicit ostracization that underscores all derogatory language.

“My uncle is retarded.” A classmate announced during a class trip a few months ago. I flinched in response, drawing attention to myself as I snapped out of my grogginess to accommodate an angry lump swelling in my throat. “It’s okay for me to say that,” he qualified, “because he actually has the disease… ”

I was sitting with peers at camp, the training ground for casual swearing, and one of them made a silly remark. Someone else responded with, “you’re so retarded.” It remains unclear to me if they were testing the word because it was taboo and curious on their tongue or if they genuinely feel it is an acceptable synonym. Amid their brevity, amid their apathy, amid the strength they didn’t seem to realize they possessed, I was unsettled.

These instances, while contextually different, both left me with the same nausea, the same picture in my mind of Tiki, and the same questions: Do I have the courage to speak out? Will I hold myself accountable to challenge this language? The truth was, and is…I don’t know. In this arena, I navigate a struggle with my own consistency.

I’m unapologetically opinionated. My thoughts brim with compounding arguments for change if an issue settles on my vernacular. I rarely pause before speaking out when I witness something that challenges my morals. And yet I have maintained this puzzling relationship with confrontation over language, the final vestige of a girl who once spoke into her shirt for fear that exposing her voice would leave her standing alone. Is it my place to assume the “holier-than-thou” position inherent in attempting to ordain what another person is right in saying? Further, as a person not experiencing a congenital disability, what are the implications of speaking up on behalf of someone who is? Am I patronizing?

Sometimes, I call out usage of the “R”-word. I frame my objection with a story from exposure to people with disabilities, even though I am cognizant that any protest is reduced by tempering the message. I still explain my response because I wholeheartedly resent the perception that calling out derogatory language is an attempt at policing freedom of speech.

And at other points, I fail to speak up. I delude myself, thinking that my dissenting silence is loud enough. Speaking up consistently is challenging for me because my relationship with Tiki is not just the linchpin in a broadened awareness. She was a person in my life, not a soundbite in human form. Certainly she inspires my disability rights activism. Through volunteering, I take a modest role in spearheading inclusion. Yet, I will not tokenize Tiki’s story as the tail end of a diluted speech around allyship or language. These doubts, coupled with my penchant for overthinking, result in a loathsome silence.

I endeavor to amplify marginalized voices always, instead of cherry-picking moments to do so. Responding to the “R”-word is not a microcosm of this goal, but itself an act of change. Language is never to be taken lightly. I can’t perpetually reassess if, how, or when I should be speaking out to words that oppress. My voice on this issue must ring unequivocally clear at every turn: the “R”-word has no casual space in an inclusive English lexicon. And for whatever courage it takes for me to respond at a given moment to the “R”-word it takes infinite courage to be a person living in objection to the limits this word sets.

To learn more about inclusive speech around disabilities, check out the National Center on Disability and Journalism's Disability Language Style Guide.

This piece was written as part of JWA’s Rising Voices Fellowship.

Topics: Activism, Family
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How to cite this page

Soussan, Dahlia. "My Aunt Tiki and My Disability Rights Activism." 10 July 2020. Jewish Women's Archive. (Viewed on August 11, 2020) <https://jwa.org/blog/risingvoices/aunt-tiki-and-my-imperfect-disability-rights-activism>.

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