Past, Present, and Future of SDI
by: Steven Foelsch, M. Ed.
Reintroducing Myself and the Mission of Starkloff Disability Institute
It’s been a long, cold, lonely winter—but now the weather is warmer, the trees are green, and flowers are blooming. Rejuvenation and renewal are in the air! In the spirit of the season, I thought this would be a great time to reintroduce myself and reflect on the impact of our work at Starkloff Disability Institute over the past 22 years.
My Story: From Pity to Disability Pride
My name is Steve Foelsch. I serve as the Public Policy Advisor for SDI and have been a quadriplegic for more than 40 years.
I met Colleen Starkloff about 15 years after I acquired my disability. When she learned I had a master’s degree in education, she asked me to get involved in SDI’s work creating a Disability Studies program at Maryville University. At the time, I had a very negative view of myself and of disability in general, so I declined.
The next time we crossed paths she gave me a book: Nothing About Us Without Us.
That book changed my life. Soon after, I joined the SDI team and began working with the late, great Susan Menhard. Susan was soft-spoken but a powerhouse—determined, forward-thinking, and also a quadriplegic. Together, we developed five courses and taught hundreds of students preparing to for “caring” careers—like physical and occupational therapy, nursing, and rehabilitation counselors, where they would encounter a lot of disabled people—were learning about disability from disabled people.
The Mission: Disability-Led Education
The response from students was powerful:
“You completely changed my perception of disability.”
That’s the cornerstone of our mission at Starkloff Disability Institute: disability-led programs. And it still sets us apart. I don’t know of any other college or university disability studies program that is exclusively created and taught by people with disabilities.
One of the basic lessons we taught: There is good news and bad news.
The good news? Most physical barriers have been eliminated—or at least the legislative machinery to eliminate them exists.
The bad news? That was the easy part. Changing minds is much harder.
Negative perceptions, stereotypes, and attitudinal barriers still exclude and isolate disabled people. No law can stop the silent assumptions a recruiter makes when a wheelchair user rolls into their office for a job interview. Presumptions of competence (much less expertise) tend to fly out the window.
That’s the work we continue to do. SDI delivers formal education on disability inclusion, training hundreds of people at workplaces, schools, and neighborhood organizations every year. We also educate by example: disabled people simply living, working, loving, and contributing as members of the community. And I believe that is the most impactful.
My Public Policy Work
Today, I serve on multiple advisory and policy boards:
- Commissioner, St. Louis Affordable Housing Commission
- Appointee, St. Louis Metro Transit Accessibility Advisory Committee
Over the past year, I proudly represented SDI when we were invited to Missouri’s capitol to provide testimony or join roundtables:
- Missouri Committee on Workforce Innovation and Technology
- Senator Eric Schmitt’s Roundtable with Disability Rights Advocates
- Missouri Workforce and Infrastructure Development Committee
I continue to educate in the classroom as well, frequently dropping in as a guest lecturer on disability for med students, law students, and undergrads at universities in town.
All of this work is shaping the attitudes of current and future policy makers and stakeholders. They get the history and best practices about disability from a person with lived experience of navigating a world not built with people like me in mind. They also see those lessons in action when I roll into the room, a confident, disabled professional.
Elevating the Role of Personal Care Attendants
Many disabled people employ Personal Care Attendants (PCAs, sometimes just called a Personal Attendant). PCAs assist with activities of daily living impacted by a person’s disability, like showering or eating.
For me, PCAs are the difference between a full life as a professional making decisions for myself (living downtown, going to concerts, being active in the community) and getting locked away in a nursing home.
That’s why I’m passionate about building a better system. PCAs are essential workers and deserve better compensation and recognition. Disabled people need reliable employees for this critical work.
There’s a big opportunity to integrate this kind of experience into college courses for students entering caring professions. Students would receive class credit for the hands-on experience of working as a PCA, learning about disability outside of a clinical setting from the disabled people they work for.
My pitch is, “If you want to know anything about the challenges people with disabilities face—and the innovative solutions we come up with—work as a personal attendant.”
Looking Ahead with Gratitude
The past couple of months have been disorienting, but I’m incredibly grateful—for the mentorship I’ve received from trailblazing disabled leaders, the insight and dedication of my colleagues, and your interest in reading this post.
Disability is a powerful part of identity, pride, and leadership, and sharing that with others is the best job I could imagine. Thank you.
