The Starkoff Institute for Disability Research is a disability-led nonprofit organization.
Starkov Institute for the Disabled
Pivoting from pet food to helping people with disabilities is quite the career-advancing move.
But Steve Degnan has done just that. After more than 30 years with big-name companies like Nestle and Purina, the longtime consumer goods executive planned his retirement earlier this year and made his role as president of the Starkloff Institute on Disabilities his main priority and focus. The institute’s website states that it strives to “enable people with disabilities to thrive” and that its work is focused on eliminating “barriers and stigma.” [that] “These policies continue to exclude people with disabilities from the workplace and deprive them of the freedom and dignity that good-paying jobs bring.”[empower] “To change the systems for individuals with disabilities to succeed in their careers and build a sense of inclusion and belonging.” That mission aligns well with Degnan’s personal values, as he serves on the boards of several nonprofits that strive to make the world as good as possible, he said in a recent interview.
“I see service not just as a choice, but as a fundamental obligation,” Degnan said.
Degnan explained that his decision to join the institute was personal, as many in his family have some kind of disability. He said the institute found him out of nowhere in 2009, and he believes it was “karma or God’s plan” that connected him with them, saying, “Sometimes the cause comes looking for you…If you open yourself to it, it’s very rewarding.” Two of the institute’s directors made an unscheduled visit to Purina headquarters one day 15 years ago and asked the receptionist at the front desk in the lobby if they could speak to an executive. That person was Degnan, who picked up the phone and agreed to discuss a corporate partnership. Soon after, Purina became a partner, and Degnan eventually became a director of the institute.
Degnan described his early contributions to the institute as “fairly practical and tactical,” and included activities such as documenting the need for more disabled people in the workforce. As his knowledge of the disability community grew, Degnan’s contributions expanded over time, and he became increasingly involved in areas such as strategic direction, project management, and more. Degnan hopes he has been effective in these new roles and responsibilities, but modestly stated, “I’ll leave that to the stakeholders to judge.”
Lori Becker shares Degnan’s passion for organizations that work to make the world a better place, as well as her affinity for the disability community. Becker, who serves as CEO of Starkloff Disability Association, was born with a rare genetic condition called Stargardt Disease, a retinal disorder that causes macular degeneration starting at an early age. Additionally, she has been diagnosed with epilepsy, meaning both of her disabilities are largely invisible. She discovered the association a few years after Degnan, in 2013, when she joined for professional development opportunities. Her background is in areas such as community engagement, marketing, organizational psychology and public policy, all of which she describes as “a great opportunity to be a part of.”[allow] I was able to bring a wide range of skills and experience to the job.”
Describing the institute in his own words, Becker explained that the organization is staunchly committed to “fostering inclusion and confidence among disability professionals and community stakeholders.” He told me that the institute’s ethos is deeply rooted in disability rights, and that it plays a “unique” role in fostering an environment in which people with disabilities can thrive. Education is central to this ideal, and Becker made a point of teaching able-bodied people the history and culture of the disability community.[changes] Heart and Spirit [while] It dispels myths about disability and promotes true inclusion.”
“As experienced professionals, we address barriers to inclusion from both sides,” Becker said of the institute’s philosophy. “We teach individuals with disabilities, from professionals to students, to dream big, let go of low expectations, and embrace their identities with pride. We work with businesses and community partners to identify and remove systemic barriers in the places where we all live, learn, work and play.”
When asked about the current state of disability representation, both Degnan and Becker said they were generally optimistic that things were improving. Becker said the problem is that while disability recognition is on the rise, it’s not necessarily leading to results. Disabled people are still twice as likely to be unemployed as able-bodied people. He noted that the unemployment rate is “even lower” when compared to intersectional groups such as Black, Indigenous, and queer disabled people. By the way, I don’t have a college degree, but having one doesn’t guarantee success. Degnan said that only 45% of disabled people with bachelor’s degrees are employed, compared to 85% of able-bodied people with bachelor’s degrees.
But perceptions are slowly changing. “Positive images, messages and role models are emerging, especially through social media,” Becker says. “Disability advocates are challenging prejudices and false narratives. We’re moving past the pity and charity stage, but those messages still permeate.”
Meanwhile, Degnan said there has been “steady progress” in raising awareness of the disability community, largely due to the efforts of the institute’s founders, Colleen and Max Starkloff, and Degnan’s colleague, Becker. Degnan believes society is generally more accepting of people with disabilities today, but he thinks sentiment doesn’t always match facts. He echoed Becker’s comments about the Grand Canyon-sized gap in unemployment rates. As always when it comes to accessibility, “we have a lot of hard work ahead of us.”
“[We] “While we often want larger companies to be our allies in this regard, we want to remind our colleagues that discrimination against people with disabilities is more likely to occur in smaller businesses than in larger companies that are subject to federal affirmative action laws,” Degnan said. “Engaging with the small business community is very important to us.”
One particularly positive aspect for the disability community has been technology. Degnan said the abundance of assistive technology is “just getting better and better,” and the ability to work from virtually anywhere in the world — even remotely — is a “huge help” for people with disabilities. He added that modern technology has already made a “huge difference” in many people’s lives, and that this trend will continue.
“In the disability community, Starkloff Disability Association will continue its flagship programs to build the confidence of people with disabilities to compete for jobs and bring their unique strengths to the workplace,” Degnan said. “Our programs for professionals, college students and young people are aimed at helping people with disabilities pursue the dreams they want to pursue. Lori and her team are now working on a long-term vision that reflects this hope.”
Becker agreed with Degnan about assistive technology, saying it’s “great for everyone” and that she uses closed-circuit television and magnification software to read print. She also praised industry leaders such as Apple and Microsoft for “really making strides in integrating accessibility features into their products.” [and] We’re moving it into the mainstream.”
In terms of feedback, Becker said most people lament that they wish they had known about the institute sooner. He boasted that the institute’s programs help people with disabilities advance in their careers at a 30% higher rate than similar government-backed initiatives. He added that there is great value in people with disabilities meeting like-minded people and seeing their condition not as a flaw or a superpower, but simply as part of being human. But despite the institute’s good intentions, Becker revealed that “significant barriers” remain within companies when it comes to taking people with disabilities seriously. He said that even the most enthusiastic DEI advocates “face obstacles” in implementing programs designed to benefit people with disabilities. Finally, Becker said many companies misunderstand the requirement that people with disabilities must make up 7% of the workforce. While prospective employers are prohibited from asking about people with disabilities in job interviews, Becker said companies should encourage anonymous self-reporting as a way to better track internal representation goals.
“Progress is being made, but we know there is still much work to be done,” Becker said.
Looking to the future, Degnan turned again to technology, saying that in the short term he believes society is “on the brink of technologies that will enable anyone with a disability to engage in knowledge work and excel at all levels.” In the long term, his own dream is that physical disabilities will be mitigated through medical and technological interventions, allowing “people with disabilities to do all kinds of work,” not just knowledge-based work. The institute plans to “monitor and participate in all the solutions as they evolve.”
For Becker, the institute’s team is “all in,” she said. They have ambitious goals: “We envision a world where the value and dignity of every person is recognized and where people with disabilities can contribute meaningfully with their talents,” she said, adding that financial independence achieved through competitive employment is “critical” to the organization’s long-term success.
The institute’s flagship project is the development of what Becker calls a “fully universally designed headquarters, co-working space, and community education center” in downtown St. Louis. The building is scheduled to be completed by the end of 2026, and Becker told me the space is intended to “serve as both a resource and an educational tool to showcase a contemporary model of disability inclusion.”