Dot Nary: Women with disabilities and their revolutionary acts (Column)

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An activist leading the longest federal building sit-in in U.S. history. A high school student suing a school district to get the equal education guaranteed under law. An advocate being investigated by government authorities — at her mother’s home! — because of her successful organizing activities. These changemakers are all women with disabilities. 

When you consider the obstacles that women face in paternalistic societies along with those that disabled people face in ableist societies (i.e., ones that discriminate in favor of nondisabled people), their contributions are particularly impressive. 

March is Women’s History Month, a time to reflect on women’s contributions that have improved society for all but have often been unrecognized. As the history of the disability rights movement is also often unrecognized, I write to celebrate the disabled women mentioned above, plus two more, all of whom I am fortunate to know personally. These women are remarkable because, from an early age, they have refused to accept the second-class citizenship frequently assigned to disabled persons and they continue to work to promote equity for all disabled persons. When you consider that one in five people in the U.S. is disabled and that anyone can acquire a disability at any time (hello stroke, or auto accident), their efforts to create a just society where all can participate and thrive should be meaningful to everyone. 

You may recognize the name of the first activist, Judy Heumann, from the recent film “Crip Camp”; her recently published autobiography, “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist”; or her guest of honor appearance at KU’s 2020 celebration of the 30th anniversary of the passage of the Americans with Disabilities Act. 

Judy contracted polio as a child and became a lifetime wheelchair user. I met her years ago while working in the field of independent living in New York. I admire her for her success in so many areas: leading the sit-in to force Implementation of Rehabilitation Act of 1973; serving as an assistant secretary in the Department of Education during the Clinton administration; serving as adviser on disability and development to the World Bank; and working to include disability in the philanthropic work of the Ford Foundation. 

Still, despite these lofty accomplishments, it was Judy who succinctly articulated the basic ongoing struggle for disability equity and human rights in her comment, “I’m very tired of being thankful for accessible toilets. If I have to be thankful for an accessible bathroom, when am I ever gonna be equal in the community?”

Anjali Forber-Pratt, the student litigant, describes herself as a “brown, disabled, adopted scholar-activist.” Adopted as an infant from India by an American couple, she contracted transverse myelitis soon after, which impaired her ability to walk. Early on, she channeled her drive to excel into competitive wheelchair sports, including skiing and wheelchair racing. At the same time, recognizing that she lacked the same access to education as her high school peers, she sued her school district under the Americans with Disabilities Act and won. 

Then, enrolling at the University of Illinois Urbana-Champaign, a mecca of accessibility, she earned bachelor’s, master’s, and doctoral degrees. Soon after, her drive to succeed propelled her to compete in the Paralympics in Beijing and London. For several years, she worked as a researcher at the KU Center on Developmental Disabilities. Recently named director of the National Institute on Independent Living, Disability and Rehabilitation Research (NIDILRR), Anjali has conducted groundbreaking work on the importance of psychologists’ support for the development of “disability identity” in clients, rather than focusing on “fixing” them. Anjali writes, “The experience of disability is shaped by the dimensions of race, gender, class, gender expression, historical context, and power imbalances,” and values the diversity of the disability community as an asset. 

Yen Hoang Vo, the successful organizer, and I met as colleagues at KU where she obtained her M.A. under a Ford Foundation fellowship. Yen contracted polio as a child in Vietnam when rural residents were unable to access vaccines during the Vietnam War. Her experience of living with a disability spurred her to address the rights of all disabled Vietnamese citizens by co-founding the Disability Research and Capacity Development Center, which supports communities across Vietnam to shape disability policy and law. 

Because many Vietnamese people believe that disability is a punishment for transgressions in a past life, people with disabilities are often relegated to the margins of society and unable to find work. As Yen noted, “Our biggest challenge is changing people’s mindset.” But this mindset is so ingrained in Vietnamese culture that changing it is considered radical and threatening — which is why police came to the home of Yen’s elderly mother to question her about her daughter’s activities. Despite these barriers, Yen persisted, earned a doctoral degree in social work in Australia, and in 2018, received the Ramon Magsaysay Award, sometimes called the Nobel Prize of Asia. She sees her proudest personal achievement as being a role model, saying, “Many young people with disabilities have told me that they no longer feel hopeless and will take actions (such as going to school or advocating for disability rights) to change their lives.”

In considering the accomplishments of these women, a line from the poem “Yet Do I Marvel” by Harlem Renaissance poet Countee Cullen resonates with me. He wonders at the “curious thing” that God would “make a poet black, and bid him sing!” While Cullen was writing of the plight of Black artists, I interpret his words as marvel at anyone who overcomes barriers of discrimination and low social expectations to achieve their goals. In that vein, I want to celebrate two local women whose work to promote disability rights makes our community more just and equitable. 

Ranita Wilks has long been a mover and shaker in the disability rights movement in Lawrence and across Kansas. Sustaining a spinal cord injury at the age of four and facing multiple barriers as an African American woman with a disability, Ranita has contributed significantly to the community as an advocate, case manager, peer counselor, appointed member of the Kansas Commission on Disability Concerns, and frequent speaker on disability issues. She has used her own experience in growing up with a disability to facilitate transition to adult life and employment for many youths with disabilities and serves as a caring godmother to two young women. Recognized as a “KU Woman of Distinction” by the KU Emily Taylor Center for Women and Gender Equity and having served as Ms. Wheelchair Kansas 2006, Ranita is a role model for persistence and determination, saying, “If you never try, you’ll never know what could have been.” 

Stephanie West-Potter uses her personal experience of living with bipolar disorder to inform her work as a Lived Experience/Disability Consultant at the local, state, and national levels. A riveting speaker, Stephanie shares her own struggle to find collaborative providers and the right medications to illuminate a path to quality of life for all disabled people, with particular relevance for those with psychiatric diagnoses. Stephanie advocates for this group to be included as bona fide members of the disability community, where she has been an advocate for voter registration. Her experience working for disability rights organizations, her service on boards of directors, and her dedication as a foster mom, along with her wife, to two boys with autism, speak to her determination to create a more just community for all. Stephanie says, “I have witnessed firsthand the disparities that create a cycle of poverty. I believe that through education and community support, society has the power to break that cycle.”

All five of these women are leaders in the struggle to increase understanding of disability as a common human condition and an issue of diversity, versus the outdated view of disability as a personal frailty and a reason to be shunned and segregated. They join many other women with visual disabilities, deafness, intellectual and developmental disabilities, traumatic brain injury, and other disabilities who are also leaders in the disability community. 

I close with the words of another hero of mine, the late author, attorney, and human rights activist, Harriet McBryde Johnson, whom I regret I never had a chance to meet. 

Born with a neuromuscular disease, Harriet was described by her sister as a feisty child who “tried to get an abusive teacher fired; the start of her hell raising.” No wonder that Harriet went on to protest the pity-mongering Jerry Lewis telethons and to publicly debate Peter Singer, a Princeton University philosopher and bioethicist who advocated that parents ought to be able to euthanize their disabled children up to one month after birth. 

Harriet wrote: 

“The nondisabled world tells disabled people generally that our lot is unavoidably tragic, and if we’re smiling, we’re smiling through tears and despite suffering. In the face of these powerful social forces, I believe that living our strange and different lives, however we choose and manage to live them, is a contribution to the struggle. Living our lives openly and without shame is a revolutionary act.”

So, these “revolutionary acts” are why we should recognize women with disabilities during Women’s History Month and support them every month of the year. 

— Dot Nary is a disability activist, researcher, educator, and lover of animals. She grew up on the East Coast and still misses the ocean but loves the beauty of the prairie. Read more of her writing for the Times here.

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