Although the inclusion of people with disabilities in U.S. public policy may be fractured at best, many institutions around the country are trying to change that situation. Whether it is through forming public-private partnerships, connecting research with resources, or helping the mobility-impaired participate in public policy through remote viewing or cyberlearning, some schools of public policy and administration are working to turn the tide.
[Above: Individuals from American University’s partner organizations participate in a United Nations conference via internet-enabled robots.]
When Erica McFadden was born, doctors didn’t think she would ever be able to walk. However, with time and hard work, she not only has been able to accomplish that goal, but has become a leader in disability public policy.
McFadden, PhD, executive director of the Arizona Developmental Disabilities Planning Council and former senior policy analyst at the Morrison Institute for Public Policy at Arizona State University (ASU), has cerebral palsy. Because of her condition, she walks with a limp and can’t use her right arm. As a child, McFadden was in and out of surgeries to address a growth issue in her leg and was unable to do many of the same physical activities as her peers. Consequently, she says she lost out on many opportunities to socialize and build confidence.
A turning point occurred, however, when a friend offered McFadden a job at a restaurant during high school. That opportunity marked the first time anyone believed in her or gave her a chance to prove herself in the mainstream workforce. “From then on, I decided I was going to fight for people with disabilities and to look at how we [as a society] can do more to make things inclusive,” she says.
After college, McFadden worked in the nonprofit sector but became frustrated by the limited resources available to help people with disabilities, not to mention the sheer number of affected individuals. In Arizona, one in three — or 2.2 million people — are directly affected by a disability, mirroring the national average. That statistic cuts across many societal issues, including foster care, incarceration, poverty, joblessness, and more. “The list goes on as to how disability affects every major policy issue we’re facing,” explains McFadden.
She says it is also difficult to obtain funding for initiatives or track outcomes because “disability” is not classified as it should be. “People don’t see disability as a demographic,” she says. “When people say inclusion, [most] think that [means] race, ethnicity, or gender.” That may be one reason it’s rare to see someone who is deaf or visually impaired serving on a public body. These entities often don’t know how to accommodate members with physical or cognitive limitations — and usually don’t even try, McFadden says. This situation can make people who are already marginalized feel even less able to participate in public policymaking.
“I really feel it’s important that you have representatives as your political leaders who look like you, whom you feel you can talk to, and who have your best interests at heart,” she says.
Facilitating the involvement of persons with disabilities in discussions about policies that will affect them is key to ensuring services that will truly meet their needs. But as Monika Mitra, PhD, an associate professor in the Heller School for Social Policy and Management at Brandeis University, knows, such inclusion is not always the case.
As interim director of the university’s Lurie Institute for Disability Policy, Mitra specializes in research to help improve the lives of people with disabilities. She says that approximately 52 million Americans have some kind of disability. Not only are these individuals vastly underrepresented in a variety of fields, but they also face many challenges in daily life.
“There’s a wide spectrum of barriers that keep people with disabilities from being employed,” Mitra explains, adding that those barriers also result in these individuals being excluded from public policymaking and leadership. She says barriers can range from poor educational outcomes to a lack of financial independence.
Improving Inclusion for Better Policies
A prominent slogan in the disability realm is “nothing about us without us.” This phrase is also a fixture at the Institute on Disability and Public Policy (IDPP) at American University (AU) in Washington, D.C.
“It means, essentially, that there should be no discussions about public policy and access without persons with disabilities involved,” says Derrick L. Cogburn, PhD, executive director of IDPP and an associate professor of international communication and development at AU. “[This is] because the insights that come from the lived experiences of persons with disabilities can make policies, procedures, and accommodations better.”
AU and IDPP work to increase the participation of these individuals in policymaking in several ways.
Around 2009, Cogburn was part of an effort to launch AU’s first virtual master’s degree for disability and public policy — which also happened to be the school’s first fully online master’s degree program. The effort grew out of the university’s longstanding initiatives in Southeast Asia, where a large number of citizens have disabilities resulting from war and natural disasters.
With support from the Nippon Foundation, AU was able to recruit its first cohort of students who were blind or visually impaired, deaf or hard of hearing, or mobility impaired. The next five years were spent building a network of partner universities in that region of the world. Once those institutions were able to take greater ownership of the recruitment process, Cogburn and others were able to turn their attention to more local matters.
One of them is AU’s 2030 program, a strategic-planning initiative that attempts to anticipate critical needs on campus before they arise. Of the 40 proposals submitted to the provost’s office three years ago, the one from Cogburn’s department was selected first. It focuses on increasing opportunities for cyberlearning and capacity-building around disability issues and governance campus-wide.
“This allows us to develop programs throughout all the schools and colleges here at AU, working with faculty members across the campus,” Cogburn says. “We have a faculty advisory board that really reflects the richness of our approach to this area on campus, but [we also work] with students.”
Cogburn’s project places a particular emphasis on helping people with disabilities participate in United Nations’ and other international meetings. This past summer, a group of individuals with disabilities from partner organizations in Washington, D.C., Bangladesh, Brussels, and Fiji were invited to participate in a U.N. conference in Mexico City via internet-enabled robots. The bots stand about 6 feet tall and have 360-degree, wide-angle lenses with screens that show the faces of participants; they were able to roam around the conference and allowed users to see and do all the same things as actual attendees, including having a presence at dinners and other networking functions as well as being part of panel discussions on international policy issues.
Additionally, the robots were outfitted with T-shirts identifying where their operators live and work. “With the shirt and the head unit, [the robot] very much resembled a person moving around,” Cogburn says.
Because of the overwhelming response to the robots in Mexico City, Cogburn and his colleagues plan to expand their use of the technology to further improve the inclusion of individuals with disabilities in public policy events.
“There is so much potential here, and we’re so excited because a number of international organizations have now contacted us about how to take this to the next level,” says Cogburn. “[So we’re thinking about] how we can start to institutionalize this so that more people can use it.”●
Lindsay Jones is a contributing writer for INSIGHT Into Diversity. This article was published in our March 2018 issue.