Colleen Starkloff Retires After 50 Years Advancing Disability Rights

Collage of photos of Colleen Kelly Starkloff, including a portrait with Max, smiling with Judy Heumann, chanting during a march, and speaking from behind a podium in a suit.

Founder and Board of Directors Member Colleen Kelly Starkloff has announced her retirement from the Starkloff Disability Institute effective immediately. The commitment she and her late husband Max have exhibited on behalf of the rights of the disabled over the last 50 years has been transformative for St. Louis and the disability community.

Ms. Starkloff has worked in the field of disability rights since 1973, when her husband Max Starkloff founded Paraquad, one of the nations’ first federally-funded Centers for Independent Living. In 2003, Max, Colleen, and their longtime friend David Newburger founded the Starkloff Disability Institute. Both nonprofit agencies stand as a testament to her unwavering dedication to the quest for equal rights and independence of people with disabilities in St. Louis and beyond.

Educating and training the disabled and non-disabled communities on issues related to full participation of people with disabilities in society has been her life’s work. From the early independent living movement, to coordinating activities that promoted the successful implementation of the Americans with Disabilities Act (ADA), to the development of new initiatives, Ms. Starkloff’s dedication to disability inclusion will leave a lasting impact.

Ms. Starkloff understood the barriers that prevented disabled people from accessing affordable housing, a key pillar of independent living. In 1999, she joined a citizens’ advocacy group responsible for the establishment of the Affordable Housing Commission in the City of St. Louis, which oversees a $5M Affordable Housing Trust Fund. She ensured that housing created by the Trust Fund must include Universal Design features to increase physical accessibility. She served as Founding Chair of the Commission. She organized six national Universal Design Summit conferences which train architects, designers and builders on uses and benefits of Universal Design in home and community design.

Ms. Starkloff advocated for the teaching of Disability Studies, in which disability is seen as a social identity, and taught by people with a disability at the college level. In 2005 she introduced Disability Studies into the curriculum at Maryville University where agency staff members taught this curriculum for fifteen years. From 2005-2010 Ms. Starkloff collaborated with the Missouri History Museum to create a 1,000 square foot exhibit focused on Disability History. Titled “The Americans with Disabilities Act: Twenty Years Later”, this exhibit remained open and free to the public for 19 months, drawing an estimated 163,000 visitors to share in this legacy.

Ms. Starkloff’s advocacy efforts spanned far beyond St. Louis. She served two terms as the United States Organizer of the Japan/USA Conference of Persons with Disabilities. In 2014 she was responsible for organizing advocacy efforts in Missouri to encourage Senate ratification of the U.N. Convention on the Rights of Persons with Disabilities. She participated in the annual conference of the National Council on Independent Living (NCIL), at which a scholarship is given in honor of founding member, Max Starkloff. Ms. Starkloff cherished friendships and strong connections with the Disability Rights leaders across the country. Together they forged pathways to independence and helped make St. Louis renowned for accessibility and opportunities for disabled people.

Later in her career, Ms. Starkloff spoke publicly on a variety of subjects related to disability history, the Disability Rights Movement, Independent Living and the emancipation of all people with disabilities. A 1993 graduate of Coro’s Women in Leadership Program, she won numerous awards for her work. In 2011 she was presented a Doctor of Humane Letters by Fontbonne University. She is also a St. Louis “Woman of Achievement” for 2017. She was awarded an Inspire Award by the Bi-State Development Agency in 2018. In 2019, she received the Saint Louis University Alumni Merit Award for the Doisy College of Health Sciences.

Her life story is captured in Max Starkloff and the Fight for Disability Rights, a biography about her late husband.  The book is available in print at the Missouri History Museum, or online as an ebook or audiobook. She also shared the story of her life with Max at StoryCorps (featured on NPR and made into an animated short).

We extend our best wishes and sincere appreciation to Colleen and her family for all they have done to promote the rights and dignity of the disability community.


If you would like to make a gift to honor Colleen’s legacy, as we continue the important work she started, please click here.


Photos of Colleen from left to right: with her late husband Max Starkloff; with Judy Heumann; leading a march on the 25th Anniversary of the ADA; delivering keynote address.

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