Tribute to Sue Willis

Sue WillisMay 14, 2020: This week, the disability community, family, friends and many others are mourning the loss of one of the most influential advocates for disability rights in Ohio. The Ohio Developmental Disabilities Council learned on Monday that Sue Willis, a long-time friend and member of Council, passed away. Sue was the Director of the AXIS Center for Public Awareness of People with Disabilities. Last year, she completed her terms as a Board Member of Disability Rights Ohio and a Member of the Ohio DD Council. With a career that spanned decades, Sue’s efforts always worked to bring people together to advance the cause of people with disabilities.

Sue, who lived in Columbus, was born with brittle bone disease, causing her to have more than 100 hospital stays, heavy casts, and braces. She walked with crutches until about 20 years ago when she transferred to a power chair. Sue once said, “Regardless of these disability-related parts of my life, I’ve lived as a very independent person. Just ask my parents when I told them I was moving to Denver!”

She received her Bachelor’s and Master’s degrees in Communication and Design from The Ohio State University. Following college she worked in Denver developing career exploration projects for elementary and middle school students. Four years later, she moved back to Columbus and was an art director for a textbook publisher and an advertising agency.

In 1976, Sue established a photo/design business with partner Vince McGuire. Initially, McGuire-Willis & Associates offered production and marketing services. The company grew and expanded its services to developing training programs for central Ohio corporations and agencies. One of those agencies was the Ohio Rehabilitation Services Commission (RSC), now known as Opportunities for Ohioans with Disabilities (OOD). RSC opened many doors to prospective customers, including agencies, like the Ohio DD Council, who offered competitive grants.

Involvement with the Ohio DD Council

Sue had a long and valuable history with the Ohio DD Council. In 1992, she received a grant that focused on public awareness from the Ohio DD Council. Of interest, this made her the first grantee recipient to be a person with a disability. Through the grant, she established and was Director of the AXIS Center for Public Awareness of People with Disabilities. She created public awareness materials, conducted presentations, and planned conferences. She also published Council’s first print newsletter, DD Quarterly, from 1992 – 2006. This statewide publication was quite popular, reaching out to 22,000 readers. Sue was involved with other grants too, most notably her role in planning the successful technology conferences funded by Ohio DD Council in 2013 and 2015.

Sue was an official Member of DD Council from 2013 to 2019, as the designated representative from Disability Rights Ohio. During that time, she was chairperson of the Employment and Leadership Development Committees. She also established the Clear Language Subcommittee, which was a passion of hers. The subcommittee focuses on making Council’s materials easy to understand through the principles of plain language and person first language.

Other Contributions

Sue Will receives the 2015 Synergy AwardIn addition to her contributions to DD Council, Sue was involved with numerous organizations, campaigns and projects, including:

  • Planner for multiple conferences, including the Solidarity Conference which once brought Christopher Reeves to speak.
  • Founding member of Disability Rights Ohio’s board of directors and past president of the board.
  • Member of the Ohio Olmstead Task Force, Columbus Mayor’s Committee on Disability, Advisory Committee on Money Follows the Person, Disability Policy Coalition, Ohio Vote Coalition and many more.
  • Founded many advocacy groups and coalitions, such as the Ohio Disability Employment Alliance.
  • Writer and designer of numerous publications distributed through the AXIS Center, DD Council and other public and private organizations.
  • Mentor, trainer and speaker to youth and adults with disabilities.
  • Advocate for women's health issues related to disability, such as access to medical offices and mammogram machines.
  • Provider of testimony before the House and Senate on many proposed bills.
  • Recipient of the Synergy Award in 2015, an award that honors a person whose work in the disability field “represents the interaction of two or more agents or forces so their combined effect is greater than the sum of their individual effects.” To the right is a picture of her while receiving the award.

As you can see, Sue led a full life that truly made a difference to many. She will be missed. Her obituary can be viewed here:

Share a Favorite Memory about Sue

We at the Ohio DD Council are deeply saddened by the sudden loss of Sue, but we choose to celebrate her life at this time. And you can help! What is your favorite memory of Sue? Please share it with us by filling out the form below. Your comments will be added to this page once reviewed.


"I have known Susie my entire life - she was my Mom's best friend since Clinton Middle School. Susie was like an aunt to me. She was a member of our family. I do not have a favorite memory as Susie was part of every significant moment in my entire life until now. Her parents and siblings moved to Phoenix years ago so when she began fighting lung infections this year it was my parents who went and stayed with her when she was sent home from the hospital and too sick and worn out to be alone. My engineer dad rigged up a system that had 60' of oxygen cable that allowed her the move around her house and not be stuck in one place. As a child I never thought of Susie as handicapped she was just Susie. She used to babysit me, we had sleep overs, as I got older I cut her grass and painted her house. Ever since I was old enough to realize the remarkably difficult hand she was dealt in life she has been an inspiration to me and the entire Soule family. You have no idea how much she is missed." - Phillip T. Soule, III

"I don't have a singular, fondest memory of Sue. Her mild manner, yet steadfastness and commitment to the rights of people with disabilities at every turn are forever etched in my mind. Her fondness for my son, Micah, will always be remembered." - Sue Hetrick, Center for Disabilty Empowerment

"I remember Sue as being one of the strongest and most astute advocates I have ever met." - Tony Thomas

"I had the honor of meeting Sue and learning so much from her when I was a member of the Board of Directors at Disability Rights Ohio. As our president of the board, Sue was always professional, kind, friendly, smart, wise, determined and fierce. As a disability rights advocate, she really was an ‘advocate’s advocate.’ She encouraged advocacy and developed leadership in each person she met. In other words, she was a leader. The world is a better place because of Sue Willis. And whether you knew Sue or not, follow disability civil rights law, policy or advocacy or not, Sue made Ohio better for all of us. Sue you will be missed. Your work and legacy will carry on and continue forward in all of the lives you have touched while you were here with us. Thank you and may you Rest in Peace." - Sara Bitter

"I first met Sue when I was working on my masters thesis, in 1991. I was looking for citations about person-first language and was directed, by Margaret Burley, to talk to Sue. I met Sue in Columbus and her enthusiasm for my thesis was refreshing. We talked for an hour and she provided me with pamphlets, brochures, posters, etc. ...and a booklet of research citations. The print materials, Sue said, were for my professors, at the University of Dayton, who had not heard of person-first language, and most definitely were not using it! I saw Sue many times, over the past 25 years, and she never forgot my U.D. professors! The field has lost a true advocate!" – Sue Bitsko (former SWOSERRC and HCESC consultant)

"I first met Sue at a Solidarity Conference. My fondest memories are talking and telling her my advocacy thoughts. And her visits to Hamilton County DD Services!" – Diana Mairose

“I met Sue Willis when I attended my first Ohio DD Council meeting in 2013. I remember Sue as a very warm and welcoming person who had a genuine interest in everyone she met. Sue had a great smile and wonderful laugh! Sue was an incredible advocate for people with disabilities across the state and was particularly dedicated to making sure information was accessible to everyone. Her strong advocacy and friendly personality will be greatly missed by all who have known her." – Ilka Riddle, Director, UCCEDD

“We have lost a wonderful person, friend, and great advocate. Sue was a positive force and always fought hard for people with disabilities. She was amazing, and was a great source of knowledge. Ohio won't be the same without her.” – Michael Denlinger II, Ohio DD Council Member

“Sue was the first person I called when tasked with setting up the nonprofit Disability Rights Ohio, and was the leader of our board during the sometimes tumultuous transition. She was an incredibility wonderful person, and a passionate and unyielding advocate for people with disabilities. Her voice will be sorely missed.” – Michael Kirkman, former Executive Director, Disability Rights Ohio

“This is very sad news. I didn’t know Sue for long but I really enjoyed our conversations.  She had such a wonderful laugh. She will be greatly missed.” – Rhonda Rich, Ohio DD Council Member

"I first met Sue when I began working at Ohio Legal Rights Service in 2001. We both have a background in communications. When we worked on an article together for the DD Quarterly newsletter many years ago (not long after I started working at OLRS), she kind of "schooled me" on the importance of plain language and people first language. I carried those lessons with to this day. As a friend, she was always asking about my son who is disabled with genuine interest. She will be missed by many." – Kim Crishbaum, DD Council Staff