Social Workers Empower the PD Community - PMD Alliance

“I didn’t know what I wanted to do, but I always knew the woman I wanted to be.”

Diane von Furstenberg

The Social Work Seed 

From a young age, Kathleen Crist felt the fire that social and justice issues fanned in her. Her parents both came from the helping professions—her mom was a nurse, her dad a teacher—and she spent many of her days with her grandma, who lived around the corner, listening to her and her septuagenarian neighbors.  

“I spent my childhood doing nontraditional things,” Kathleen told me. Her dad, who coached middle and high school girls’ sports and who was proud to have two daughters, gave her lessons in gender equality, which planted the seed of social justice in her. Quietly, she also began observing her older neighbors and the subtle ageism they experienced each day. “That’s how my social awareness began to grow,” she said.  

She was certain she wanted to grow up and help the world, but wasn’t sure how. By the time she took her first social work class in college, she knew she had discovered her calling: “Bingo,” she said. “I loved the policy angle and the advocacy, but it was really the social justice work that sparked my brain and said, ‘This is where I need to be.’” 

Kathleen Crist PD Social Worker

Next Stop: Parkinson’s 

Kathleen has spent most of her career working with older adults. In between her undergraduate and graduate studies, she got a personal encounter with caring for elders. She spent a year as the primary caregiver for her grandmother, who had Alzheimer’s. “It gave me the most amazing life experience, in additional to professional experience.” Reflecting for a moment, she paused, “I’m getting a little teary just talking about it.”  

By the time she was ready to apply for a full-time job, she had spent a few years in the trenches with adults with dementia and Alzheimer’s. As deep as her personal connection to that community was, she was ready to explore: “I wanted to do something I knew nothing about.”  

When she interviewed for a job with the Houston Area Parkinson Society (HAPS) at a time when Google was just barely coming onto the scene, she told the then Executive Director, “I know nothing about Parkinson’s, but I’m a fast learner and I’m really interested in doing something different.”  

She was hired.  

On her first day, she was greeted by a note on her desk from the Executive Director that said, “Get the key from the guy next door. Good luck. I’ll be back in 12 days.”  

With no other choice, she dove in.  

Kathleen just celebrated her twentieth anniversary at HAPS, where she now holds her original interviewer’s title: Executive Director. 

Social Workers Help Us Meet Basic Human Needs 

No matter her title, Kathleen approaches her work with the Parkinson’s community from a social worker’s lens. She explains that the priorities and daily practices of every social worker can be different depending on their location and the population they serve. Generally, she explained: “The human being is a system with complex needs. And the role of social work is to help assist to make sure that each person’s basic needs—their basic human rights—are met.”  

Social work is a process of deeply listening to and appreciating each individual in their unique circumstances and ways of being, and social workers are tasked to assist each person “from a highly ethical, nonjudgmental place of practice.” It involves cultural sensitivity, an ability to assess and integrate every individual’s culture, ethnicity, gender, and faith to meet them where they are.  

In fact, Kathleen insisted that social work is not about being prescriptive. “You can’t make assumptions,” she said. She explained that a social worker may meet someone and come up with this perfect package of resources and services—except, when that person is considered in their wholeness and their uniqueness—it may not be perfect at all. “You can come in and think this person needs this, this, and this,” she said, “but maybe what they really need is just a hug and someone to say, ‘Hey, you’ve got a place to turn, we’re here for you.’”  

Social work is about going at the individual’s pace, attuning to who they are and what they can handle.  

Kathleen Crist at PD HAPS walk
HAPS group with Parkinson's

The Empowerment Theory 

For Kathleen, social work is also about empowerment. Rather than assisting someone by taking their problems and solving all of them on her own, she engages with the community and the individual or family unit itself to help them build their capacity to encounter and tackle challenges.   

“I’m not just going to fix things for you,” she said. “I’m going to give you the tools and the confidence to be able to go out and meet your challenges instead of getting buried up to your eyeballs in them.” She helps each person grow into their own power.  

This is not a process that happens in isolation: the beautiful underpinning of social work is that it is rooted in social connection: we need each other. “It really does take a village,” Kathleen said. As a social worker, she is a community partner, tapped into the pulse of her community members. “None of us have all the resources or answers ourselves, so a lot of the empowerment is about bringing together people, bringing together resources, to help people build networks for themselves.” Instead of having only one person who can help, this creates a network of support. 

She insists that this is “what people want—a sense of purpose and contribution. You feel good when you know you and your community can face and tackle whatever comes up without somebody coming in and giving you all the answers.” This empowers us all.  

Support, Every Step of the Way 

Twenty years ago, when Kathleen was just a newbie in the Parkinson’s world, she met a woman who was recently diagnosed. “She came to everything at HAPS” Kathleen said, “support groups, at least one exercise class a day, she used our transportation.” Her husband had died before she was diagnosed and her daughter and siblings were living far away.  

Every time this woman would talk to her family, they’d try to convince her to move closer to them, but she kept insisting on staying put. To her, HAPS felt like an extended family that enriched her life and provided resources she couldn’t find elsewhere. Most of all, it made her feel like she could be independent, and that gave her a sense of pride and freedom.  

For many years, this woman relied on HAPS’s support and lived fully. She was empowered, which was Kathleen’s mission from the start. Eventually, as her Parkinson’s progressed, she moved to an assisted living facility, still in Houston. Only when her falls finally became more frequent, she, with the gentle and loving nudging of her daughter and Kathleen, moved closer to family. But her deeply felt connection to HAPS remains: Kathleen stays in touch with her regularly by phone.  

This is one example of a continuum of care that meets each person where they are and invites them to use the resources available as much or as little as they’d like. Nothing formulaic, everything offered with care and understanding. 

A Testament to Human Resilience 

Twenty years of building meaningful relationships changes you. When I asked Kathleen how this work has grown her, she smiled, paused, and said, “Oh, gosh, I’m not even sure that I can put it into words.”  

Kathleen says this work has been “humbling and amazing…I have a greater appreciation for the resilience, inner strength, and the integrity of the human spirit when it’s taxed. It’s astonishing to see people who, under really difficult circumstances, get up every day, put their feet on the floor, and try to make the most of it. Who, despite the obstacles, survive and thrive.” 

Over the years, Kathleen has talked to countless experts, but she insists her greatest lessons have come from the people with Parkinson’s she has connected with over the past twenty years, people who have “opened their homes and opened their hearts and opened their souls to share. That has really allowed me to grow as a person.”  

The last two years in particular have been challenging. “I don’t think we’re going to know the full impact of COVID for a while,” she said. Over the years, Kathleen has been invited to sit bedside with families as their loved one goes through the dying process. “I don’t have the words to describe being invited into this incredibly personal and private moment,” she said. Last year was unprecedented. Kathleen was called on to give seven eulogies. “It was both heartbreaking and an extraordinary gift to be able to reflect enough on a person to celebrate their life. It gave me the opportunity to recognize how much the people we serve have taught me. I don’t have a good enough possession of the English vocabulary to encapsulate what that has meant to me.” 

Kathleen insists she would give anything to meet each of these people under different circumstances, wishing that it wasn’t Parkinson’s that brought them together. Still, she acknowledges her gratitude “for the opportunity, every day, to come and learn from people whose lives are profoundly impacted by something they can’t control. That level of courage and strength is something you can’t imagine in yourself, so it’s hard to imagine from someone else but it’s inspiring to watch.”  

Social Work is Vital Work 

As we prepare to celebrate National Social Work Day, Kathleen had a reminder: “Social work has a meaningful place in the Parkinson’s space.” While social workers are often unsung, their work, she insists, can “help someone gently steer the ship when they need it.” She went on, “If I were to get on my social work soapbox, I would say that it would be great if every movement disorder clinic had a social worker sitting there.” 

Unfortunately, they don’t. Not yet. “We don’t have a medical model that embraces reimbursing social work services, so that’s the hold up,” she said. “It comes down to money. But if we look at the long run, social workers help save money because of interventions they can do to prevent crisis situations.”  

Parkinson's advocates in Washington, D.C.

Because of social workers around the country like Kathleen, the momentum for their integrated presence in the care team is building. Because of them, communities are rediscovering the power present in each person and in all of them as a collective. Together, communities are learning to live better, no matter what life brings them. 

Watch this insightful program created by two social workers, Anissa Mitchell, LCSW, and Erin Cecchi, LCSW, called The Art and Practice of Planning - Asking for Help.

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