Dr. Karen Hagrup (Nygaard, Hirsch), disability cultural studies pioneer and nurturing partner, mother, and friend, died on June 22, 2022, at the age of 80.

In Karen style, she advocated for and built herself and her family a universal design exit ramp from this life — peaceful, colorful, and love-filled for all of us. Through her final days, Karen was at home at the Pierre Chouteau Condominiums in St. Louis, Missouri, surrounded by family and friends, including her life partner BJ (Barbara) McGough, her daughter Riina (Ellen) Hirsch, Riina’s partner Christopher Smith, her daughter Anna, and Anna’s husband William Winters.

Karen’s departure has certainly left many feeling a great loss. Simultaneously, many more continue to benefit from and are grateful for her existence. Days before Karen died, disability activist Judith Huemann thanked Karen for the difference she’d made in the world.

The positive change Karen made for herself and for others started when she was very little. Karen made Elsa and Jacob Nygaard parents as the first of four daughters (Haldis Scarborough, Grete Unhjem, and Randi Kristiansen). Karen is survived by her twin Haldis, who feels this loss uniquely.

Karen was born north of the Arctic Circle in Bodø, Norway. Living at this outer edge of the human world, three-year-old Karen contracted polio. Unlike some disability leaders, Karen’s childhood was filled with a strong message from family and community that her disability meant that she would not go far socially or geographically. But Karen had other ideas.

Leaning hard into her inborn zest for life, Karen left Norway to explore other parts of the world and ultimately landed in Yellow Springs, Ohio, in her late 20s. For the next half century, she broke all of the glass ceilings she’d faced in her early life. She traveled, obtained a doctoral degree in a second language, experienced love, marriage, and life partnership, and was the mother of two happy daughters of her own. She also survived and flourished in multiple professional and academic positions, founded organizations and published her scholarship, and left behind jobs, relationships, and others’ opinions of her that limited her potential.

Karen never quit charting her own course. She never quit cultivating caring family and companionship. And she never quit reinventing a meaningful life for herself as a disabled immigrant. By the time Karen turned 80, she’d accomplished what as a child was unthinkable even in her own mind — she’d created a long, eclectic, and successful career of speaking out for disability rights and progressive ideals.

Her hands, head, and heart were involved in numerous roles, organizations, and communities that centered the lived experiences and shared histories of disabled people. She started two independent living centers, TRAC in Chattanooga, Tennessee, and RAIL in Kirksville, Missouri, that viewed disabled people as the experts of their own services. She attended the first meeting of the Society for Disability Studies conference, and supported others to create disability studies programs at their universities.

As a professor at Truman State University and at University Missouri St. Louis, Karen urged thousands of developing educators and classroom teachers to relate to the experiences of their disabled students at a personal level. Her friendship with Ron Mace, who helped sign the Americans with Disabilities Act into law, would later help Karen recognize her own need to sue Truman State University (then Northeast Missouri State University) under the ADA after she faced repeated institutional and structural discrimination by her department and the university’s administration.

Through her own academic scholarship, Karen influenced the thinking of Ronald Grele, former director of the Columbia University Oral History Research Project, to include people with disabilities and their experiences in oral histories. As a passionate researcher with the Missouri Institute on Mental Health, Karen also understood the importance of the intersectional identities and discrimination experienced by people with invisible disabilities, and the need for their stories to be told as well.

Through the many insights and efforts she made, Karen became a pioneering figure in disability studies. She helped introduce the discipline and field of history to disability culture and the disability experience. Eventually she was called to answer her challenge to disabled people to tell their stories to the world by heeding her own words in the Oral History Review and embarking on a journey with her daughter Anna to open up and tell her own story (www.MeetMeInTheMargin.com).

While disability experience infused all aspects of her work, Karen’s sense of purpose didn’t stop at disability rights. She was especially proud of her tireless work helping to get Barack Obama elected and re-elected. During his re-election campaign she took directions from the Obama for America (OFA) campaign staff in Chicago and was given a large area of central and north St. Louis City to organize. Coordinating with Janet Feltmann locally, Karen led many groups of volunteers to strategize, run phone banks, get out the vote, and inspire each other. She cherished meeting President Obama on three separate occasions as a show of his gratitude for her extensive and critical service to his re-election campaign.

Karen also lived her politics by coming out as bisexual in her 60s. She attended numerous OLOC (Old Lesbians Organizing for Change) meetings. And she was proud of her openly polyamorous daughter Anna, often telling Anna to “give my love to all of your loves.”

Karen’s gifts for creating a positive impact were indeed deeply relational and personal. She practiced what she called co-living, learning and thriving in collaborative, everyday relationships with others. Her formative and complex marriage with Jerry Hirsch expanded and catalyzed her thinking as a social scientist. Her potent friendship with Deborah Cunningham fueled Karen’s personal growth, helping Karen reshape and re-imagine her disability identity and establish a stronger inner sense of worthiness.

Other friendships with Roschell Ware, Carol Gill, Lynn Rose, Joan Headley, David Newburger, and many others, gave Karen a vibrant community to feel inspired by and within. Karen was also gratified as a mother and fellow educator to see her daughter Riina grow alongside her in ways that disrupted abuse in education systems and championed the lives of learners of all ages.

In the last stage of Karen’s life, her loving partnership with BJ McGough gave Karen a space to blossom in her contemplative nature, enjoy the moon, and embrace a wide-open curiosity about life. Karen called this “growth for both” and she and BJ practiced this philosophy every day.

Karen Hagrup truly spent her entire life fighting for people’s rights and joy, her own included. At the age of 80, Karen was waking up all over again to new ways of understanding herself and new ways that she was capable of radically baring her personal experiences to the world in service of collective healing. She gave her story away freely in hopes that her truth telling could spur more safety and freedom for everyone.

From the beginning, Karen’s own freedom bubbled up in her laughter and rooted itself in the daily pleasures of her life. Ultimately nothing stopped her from these favorite ways of being. Throughout her life, Karen made art and explored cooking different cuisines. She was inspired by many, including Frida Kahlo and Anthony Bourdain. Sharing joy was Karen’s love language and sharing her story is her love letter to the world.

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A gathering to celebrate Karen is being planned for August in St. Louis.

In lieu of flowers, please read Karen’s story (www.MeetMeInTheMargin.com) and share it widely.

If you would like to make a donation in Dr. Karen Hagrup’s honor, please choose one of the following:

1) Send a check payable to University of Illinois Foundation, PO Box 734500; Chicago, IL 60673-4500. In a memo, write “For UIC Department of Disability and Human Development Annual Fund in memory of Dr. Karen Hagrup.”

2) Donate online at ahs.uic.edu/support and select UIC Disability and Human Development Annual Fund from the drop down menu. When you go to the payment page, be sure to type Karen Hagrup’s name into the “tribute” space.

Donations to UIC in Karen’s honor will be used to support disabled students pursuing master’s and doctoral degrees in Disability Studies.

Additionally, donations to efforts that are explicitly anti-fascist are also encouraged.