Asking me about me
Sweat beaded on Todd Esser’s brow. His thin forearms, strapped loosely to his wheelchair, jerked back and forth nonstop.
In his well-kept efficiency apartment, a single lamp burned warmly and a stereo played low behind him. He was in a reflective mood. Sadness, anger and even bemusement shaped the words he struggled to voice despite uncooperative facial muscles.
“When I was in the hospital, the nurse made me laugh one morning. I was sleeping. He walked in and said ‘Good morning. How are you? Let me take your temperature. Where do you want it? Do you want to take it in your arm pit or your mouth?’ He decided it would be in my mouth. He said, ‘Open up.’ I said, ‘Oh no! I don’t want to eat it.’ I thought, ‘Oh God, it’s going to be a long day!’ ”
—Todd Esser, quoted in Rita Valade’s dissertation, “Participatory Action Research With Adults With Mental Retardation.”
Esser, a 33-year-old Louisville man living with athetoid-type cerebral palsy (CP), tells stories of his life that sound like passages from Ken Kesey’s One Flew Over the Cuckoo’s Nest.
“I remember one time a nurse wanted to take blood from me and said, ‘Hold your arm out.’ The health worker who was with me told her, ‘No, he can’t hold his arm out. He has CP, he can’t control his arm.’
“But the nurse wouldn’t listen. She told me to hold it still. I told her I couldn’t.
“‘Then,’ she said, ‘we’ll have to hold it by force.’
“They took the blood, but everything got undone, the blood came out all over. The nurse walked away, and we had this mess. The worker who was with me said, ‘Oh my God.’ ”
Living has been a struggle for Esser from the day he was born, when doctors botched his delivery. An epidural administered too high on his mother’s vertebra caused her temporary paralysis and breathlessness. For two minutes, the unborn Esser suffocated inside his mother. The lack of oxygen caused permanent damage to his motor and mental abilities.
Getting from place to place and other things most people take for granted are struggles for Esser. Even so, he says he’s grateful to be alive in the 21st century, where he can live a semi-independent lifestyle and arrange his own transportation to medical checkups or ballgames via special bus services.
“Things may not be perfect, but you’ve got to look at it this way: They could be a lot worse,” he reflects. “A lot of times I think about the old days, when people like me were thrown away, locked up, neglected and abused.
“I feel so sad for them.”
Sharing Stories
For six years Sisters of Mercy nun Rita Valade has lived and worked with the 34 special-needs residents of the two Day Spring community facilities in Louisville. Todd Esser lives in one off Baxter Avenue.
The idea of Day Spring, Valade says, is to provide adults with mental retardation a residential community setting in which to live with one another and to interact with the general community without dependence on family members. Many, such as Cindy Cusick, 38, and Ray Goodman, 46, take public transit to work every day.
Valade has been a nun for 28 years and a social worker almost as long.
Although she held a master’s in social work, she decided to pursue her Ph.D. in the field at U of L’s Kent School of Social Work. Valade’s experience living and working at Day Spring influenced her dissertation topic choice in 2003.
![[Image]](images/askingme1.jpg)
Rita Valade visits Todd Esser, a man living with cerebral palsy, as part of her ongoing work with adults living with mental retardation.
“I became aware of many issues adults with mental retardation face trying to negotiate life within society, so I wanted to find a way to somehow study and address those needs,” she says.
“Like Todd’s experiences, there are so many stories that need to be shared,” Valade says. “I wondered if there might be a way to combine my research and get these stories heard.”
Combing the research on mental retardation to cite in her own dissertation, Valade says she noticed a disturbing trend.
“Almost all of the research literature comes from the perspective of caregivers, doctors or family members speaking on behalf of adults with mental retardation,” she notes. “For instance, articles on their food preferences were all about what family members said their loved ones liked—not what the folks themselves said they liked.”
Yet Valade found a few examples of research that followed a different tack.
“I was trying to figure out what my big dissertation project would be, and I was getting nervous because my time was running out.” she says. “Then I read about participatory action research.”
In a nutshell, this type of research allows subjects themselves to run the course of their study, with the researcher acting as facilitator rather than decision-maker.
“It hit me one day when Cindy and Jackie, two residents here at Day Spring, were trying to calculate a basketball score during a U of L game. The method they were using might not be what I would use, but the important thing is that they found their own way to get to the answers.
“It drove the point home that if we let folks with mental retardation make their own decisions there’s a lot of autonomy that can happen,” Valade says. “People can really be independent in a lot of ways.”
Struggling for Consensus
Since mass deinstitutionalization began in the 1970s, persons with mental retardation have adapted to independent living and more vocally advocated for their rights and special needs.
With that in mind, Valade decided for her dissertation project to pull together a diverse group of adults with mental and physical disabilities and observe how they handled a problem affecting their lives.
After interviewing 25 potential participants at Day Spring and elsewhere in Louisville, she gathered a group of 13. After dropouts, the group eventually totaled nine. They met monthly for 10 months in 2003 at the Leadership Institute of the Council on Mental Retardation in downtown Louisville.
“You have to pray to God so that you’re not late or not too early when you go to football. You take your TARC real early and then real late, about 10 o’clock as your window. One night, this is funny, one night we were freezing. My best friend and I went to a ball game. We were watching football all wrapped up. We had to stand there and wait and they turned the lights out! Yeah! [he laughs] They turned the lights out! Oh my God! It was so dark. I said, ‘I hope they see us. I hope TARC-3 sees us!’ And, you’ll love this, we were next to a graveyard! Let’s face it, you have to live by the TARC schedule.”
—Todd Esser, quoted in Rita Valade’s dissertation, “Participatory Action Research With Adults With Mental Retardation.”
What followed was an emotional rollercoaster ride that, after several months, had Valade doubting herself and the entire project.
At first, Valade says it was difficult for the group to come to a consensus on which problem to tackle.
“People in the group often cited problems with health-care givers—doctors and nurses who didn’t consider their needs—or with the TARC-3 bus service that provides rides for special-needs customers.”
Some complained about buses that were late, never showed up or took roundabout routes to their destinations.
“I depend on TARC-3 and sometimes the bus is late getting me to my job at Kroger,” says Cusick. “But if I’m late, I just call in to the store and tell them and I don’t get in trouble.”
However, tackling the bus issue made some members of the group skittish.
“Todd [Esser] and some of the others feared that if you rock the boat or complain about something too much, then they take away the service,” Valade says.
Despite the debates, the group eventually decided to work on improving TARC-3. In the process, Valade says she learned something about herself.
“It took me awhile, but I learned that my role was to be a facilitator,” she says. “The natural urge is to go in there and take charge of the project to move it along faster, but that would taint the whole process. I came to better understand my role and realized that I did not have the same experiences as these folks.
“For instance, I stopped using the word ‘we’ when talking with the group. I learned to sit back, to listen and to suggest, but not to control.”
Videotaping the group sessions allowed participants to analyze previous meetings and improve their consensus building.
By project’s end, the group had brought Karen Dennison, the director of TARC-3, to their meeting and presented her with a list of questions and suggestions to make the bus service better. As a result, special-needs riders can now e-mail Dennison directly anytime they perceive a problem with the service.
“We’re always responsive to customer concerns—when we’re aware of them,” Dennison says.
Whether the strategy worked gets mixed responses. Some group members believe bus service improved, while others say they’ve seen no change. However, Valade says her research project succeeded in what it set out to prove.
“It may not have been a dramatic intervention, but the most important point is that the folks themselves decided what problem to work on and how they wanted to do it,” she says.
“There weren’t any family members or staff members telling them what to do or whether it was good or bad. People had their own power.”
Moment of Truth
Last spring, Valade defended her dissertation to a committee of scholars at the Kent School of Social Work.
For many in attendance, the evening was one they’ll never forget.
Ruth Huber, a Kent professor and chair of the dissertation committee judging Valade’s project, says she remembers when she first heard of the dissertation topic months before.
“I thought she was very bold to do this,” Huber says. “This is a real outside-the-box dissertation. To give over that much control of a dissertation to a group of mentally retarded people says volumes about Sister Rita’s dedication. She’s an extraordinary person.”
In the room with Valade were 50 people from all over Louisville, including many from the special needs community who had come to her dissertation defense.
“So many people came and told their personal stories,” Huber says. “One said, ‘I may be slow, but I’m not stupid.’ The entire defense was such a moving event.”
Donna Caudill, who lives with CP, was there. Months before, she had sat in her wheelchair at her kitchen table sharing coffee with Valade when Valade presented her idea for the dissertation.
“I’ll never forget Donna’s reaction,” Valade says. “She was a little bit shaky and she looked up at me and said, ‘This is the first time someone has asked me about me; I’ve been waiting for something like this all my life.’
“And I just started crying.”
Voicing Pride
Valade’s work, titled “Participatory Action Research With Adults With Mental Retardation,” won the John M. Houchens Award as the university’s best dissertation of 2004.
For now, Valade is the interim chair of the School of Social Work at Spalding University in Louisville. She plans to continue working and living with the residents at Day Spring.
“I think this project bonded us even more because this was everyone’s project, not just mine,” Valade says.
“Often in research projects, people with mental retardation are not allowed to use their names for reasons of privacy and confidentiality,” she notes. But this time was different.
“Folks were saying, ‘We worked hard and we’re proud of what we did and we want it known.’
“I remember Theonia Jones saying, ‘Absolutely use my name and spell it out all the way. Don’t use T.J.!’”
