Northwest Arkansas Democrat-Gazette
Champion of disabled
Brent Thomas Williams
UA’s Williams is helping spread word on discrimination.
FAYETTEVILLE — On the first day of class, University of Arkansas students wandered into the auditorium as Brent Williams took the podium to begin his introduction. It didn’t take long for them to realize they were being confronted by more than a 50-year-old man with a long, graying ponytail.
“If you graduate from this master’s program and you are not pissed off with the way our society treats people with disabilities, you will not have failed,” he said, meeting their eyes. “But I will have failed you.”
Since Williams’ arrival as program coordinator for the UA rehabilitation counseling program 12 years ago, its graduates have gone on to be the chief executive officers and executive directors of the Arkansas Support Network, Sources for Community Independent Living Services and the Elizabeth Richardson Center and have largely made up the staff of the Arkansas Rehabilitation Services counselors.
His students are mad and they’re doing something about it.
As principal investigator of the federal PROMISE (Promoting Readiness of Minors in Supplemental Security Income) grant, an award of $32 million and the largest grant awarded to the University of Arkansas ever, Williams is helping focus efforts of state agencies to help disabled teenagers land their first jobs, begin a lifetime of employment and reduce overall dependency on Social Security benefits. The principal investigator is responsible for the preparation, conduct, and administration of a research grant.
VARIATION IN THE LAND OF NORMALCY
Long before his days as professor, researcher and grant writer for issues associated with disabilities, Williams had to come to terms with his own. He has retinitis pigmentosa, a condition that provides extremely limited, fuzzy vision at best, something he describes as looking through a toilet paper tube with wax paper sealed over one end.
He structures his life, work and doctor’s appointments all within walking distance. For fear that it will change how people interact with him, he often doesn’t tell people about his disability upon meeting them.
His education began at Austin College in Sherman, Texas, where he studied an amalgam of subjects and met his lifelong friend Buford Craig.
“He’s honest,” Craig says. “As my friend, he’s sometimes brutally honest, but he’d come to my aid if I needed it. All I’d have to do is say and he’d drive down to Texas.”
He said Williams has always been whip-smart and opinionated.
“He doesn’t suffer fools lightly,” Craig says. “If you’re going head to head with him, cock your pistol. He’s serious about what he does. If someone blows smoke, he’ll knock you down to size.”
Williams had long been interested in the unequal distribution of opportunity and that, paired with professor Hank Gorman’s insistence that the goal of research was not for better data but to make people’s lives better, led him to study psychology.
“I had no idea what the words ‘social justice’ meant,” he says. “But I did notice differentials in
power, in opportunity. I realized that some people were successful because they tried hard and some had just as much talent, put forth as much effort … but it had more to do with opportunity and placement in the system than it did their effort, their ability, their desire.”
Williams left Austin College with an undergraduate degree in psychology in 1987, and at the time he wasn’t sure what to do with it. After years of liberal arts theory, he got his first job at Wilson M. Jones Medical Center as a psychology technician to get PCP and methamphetamine users into restraints when the police didn’t know what to do with them. Patients frequently returned soon after their six-week stay, and it left him with an overwhelming urge to find the next step to keep people from falling through the cracks.
He applied to the rehabilitation counseling program at University of Texas Southwestern Medical Center at Dallas, and though he wasn’t sure what that meant exactly, he got in.
Unfortunately, it meant he had to face his own situation.
“My whole life I tried to pretend that I could see well,” he says. “My whole life I had tried to pass and now to get in a field where everybody talks about disability, everyone wants to acknowledge it and say it’s OK to have a disability, there was a big creep-out factor. I wasn’t sure if I was ready for it or not.”
At the time, he was still driving but was earning his driver’s license by rote rather than sight — the first of many small things that would lead to a decline in his independence.
It was uncomfortable, dealing with those changes, but afterward he wanted to change how the world works for people with disabilities.
FEELING INCLUDED
While earning his master’s degree, Williams became familiar with the works of Judy Heumann, an author who advocated the idea that being disabled has a lot to do with the tools and tasks a person is given, as well as their environment.
Suddenly, it was clear to him that the average design for public spaces — apartment complexes, workplaces, grocery stores — was incredibly limiting. It was meant for a section of “normally functioning” people, an arbitrary selection on a much wider spectrum of ability. He felt that something as simple as design that makes facilities more accessible would be beneficial for everybody.
As these ideas were taking shape, he got a new viewpoint on disability as a talk therapist for patients in drug trials at the Alzheimer’s Disease Research Center. His previous experience had dealt with low- income patients who were caught in a cycle hard to correct, but his new patients were people of status whose disease had taken independence from them.
Seeing such a cross-section of people made it easier
A PROMISE “My whole life I tried to pretend that I could see well. My whole life I had tried to pass and now to get in a field where everybody talks about disability, everyone wants to acknowledge it and say it’s OK to have a disability, there was a big creep-out factor. I wasn’t sure if I was ready for it or not.”
to distance himself from the factors of poverty and abuse and glean more overarching lessons.
“One of the things that we know is the variable inextricably tied to poverty is not gender, sex, ethnicity, race or education. It’s disability,” Williams says. “And so, though I don’t want to get in a contest of who’s more marginalized, who has suffered more discrimination, it’s relatively obvious to me.”
Working at the center made him realize that the medical world thought of anyone with an incurable disability as inflicted by illness, a label he found inappropriate when Heumann had taught him that variation in capabilities is normal, and disabled people were not necessarily broken or unhealthy.
The effect of those labels was what he wanted to study, to change.
That sharpened focus led him to the University of Illinois at Urbana-Champaign to begin his doctoral work in rehabilitation and adult counseling.
He worked in a testing lab, administering assessments that often took four to eight hours, such as IQ , neuropsychological and Woodcock Johnson cognitive tests. The practice made him more adept at identifying the breaking point in people’s tendency to keep up a facade.
Reluctant to live on a graduate student’s salary, he took a position with the nonprofit Developmental Services Center as a landlord of a transitional living facility for adults with cognitive and intellectual disabilities. While handling emergencies between the hours of 10 p.m. and 6 a.m., he closed the gap on his experiences with people who have disabilities. He had seen them in crisis, in old age, in clinical settings and therapy, but not at home. Now, as they were moving out of family members’ homes, taking a first job and gaining independence, he was there to see how they made their way and to help when he was needed.
He went beyond his duties as landlord and provided informal case management, starting with a tenant who had frightened various elderly antique dealers in town. The man was a collector of antique baby dolls, and when he was nervous, his movements became pronounced and jerky. By simply accompanying him one weekend to introduce him, explain his disability as well as his hobby, Williams helped the tenant form understanding friendships and stabilize his new life.
Williams had found that not only could disabled people gain independence, but they could make a successful transition and find their place in the community. And it was the concept that would be the basis for his career.
After earning his doctorate, Williams found his niche at the university’s National Center on Physical Activity and Disability in Chicago, where he managed day-to-day operations of a grant program that helped children with disabilities participate in activities they previously missed. It was his job to find ways for someone with a spinal cord injury to canoe, someone who was blind to ski, a person with multiple sclerosis to find an hour or two of peace in a warm-water pool.
It was his big chance to personally help them be included in society.
He was so focused on the work that he barely recognized the potential that would stem from his experience writing and learning how to manage such a large grant, an award that was something to the tune of $500,000 annually.
In 2002, Williams and his family moved from Chicago to Arkansas with the promise of better, safer schools, a shorter commute and the comfort of family nearby.
His strong and loving family bonds help make up for a childhood in which he felt like a square peg in a round hole.
“The trick is, very happy, satisfied people aren’t motivated to make great change,” he says. “Whatever it was in my childhood that made me feel slightly out of place, that communicated to me don’t question don’t challenge, sparked something. Had it been the inverse — comfortable and anything you think is OK — I might have had short hair and been an insurance salesman.”
“He’s a great father. I can’t think of a man who’s a better father,” says his wife, Mary K. Williams, who speaks with authority from her experience at Full Circle Adoption Search and Support in Fayetteville. “He appreciates our daughter [Georgia] for who she is.”
As the newly hired program coordinator for the UA rehabilitation counseling program, Brent Williams had just stepped in the door when he faced the daunting task of preparing for accreditation in less than two months. Such a comprehensive process would often be left to a tenured, long-standing professor who has already established connections with students and alumni, but Williams didn’t bow under pressure.
“He was willing to step in and provide administrative direction and support,” says Rick Roessler, UA professor emeritus of rehabilitation education and research. “That’s a rare thing. He does it very well and handled the accreditation, stepped right up and handled that.
“He’s the kind of person I enjoy working with because he doesn’t take himself seriously but takes his work seriously. I recognized that right off.”
The program was diminished when he arrived, having only two doctoral students and six master’s students. Today, it’s 18 doctoral students and 40 master’s students. Many program alumni were educators, with very few favoring community service. That, too, has changed.
“He struck me immediately as a person who had goals for the department and college,” says Keith Vire, CEO of Arkansas Support Network and a graduate of the rehabilitation counseling program. “He was determined to come on board, get to know the community and made those things happen.
“He’s decidedly pro-underdog in terms of people that he cares about who have disabilities, low income … he cares about social justice.”
Many say his work has helped the program continue to grow in size and status.
“Ever since he’s been involved, the program continues to be highly ranked, 10th or 11th best in the country today,” Vire says.
As of 2011, it was ranked 16th by U.S. News and World Report.
“He’s made an impact in the field in our state and regionally. He’s gone above and beyond to make sure the program is not an isolated ivory tower, but connected.”
More and more of Williams’ graduates are community leaders, and he continues to hold himself to the same standard, as president of the board of directors for Sources for Community Independent Living Services and chairman of the Organizational Health Committee at the Elizabeth Richardson Center.
“If I’m serious about [changing daily life for disabled people], it isn’t just about teaching,” Williams says. “I want my program, I want my graduates and me to be part of that community.”
While he appreciates theories and techniques, he believes strongly in using them to make something for the people around him.
“What I admire most about Brent is the number of ways he advocates for individuals with disabilities,” says Lisa Mathis, chief operating officer of Elizabeth Richardson Center. “He’s involved in so many ways in the community. He’s on several boards, writes and receives grants … all with the intent of improving the lives of individuals.”
Over the years, he was principal investigator for $5 million in grants, and most recently used this experience to help secure the PROMISE grant, one of only six in the country. It was awarded in October, and over the next five years, Williams and his fellow professors and researchers will team up with state agencies Arkansas Rehab Services and Currents to use that $32 million to build a support network to potentially help 2,000 disabled teenagers reduce their dependency on Social Security benefits by finding work and eventual independence. Participants will be selected in the coming two or three weeks.
So far, he’s like a duck in water. He understands that to use grants to enact real change, it takes more than just good ideas. The right managerial experience is needed, and luckily, he has exactly that.
“We’re not that naive anymore as a society. I can predict to an extent factors that lead to discrimination. It’s not magic. Why not spend that tiny bit of money up front [on proactive measures], prevent that marginalization, that stigmatization? The fact of the matter is that discrimination, segregation, marginalization cost resources.”