Abstract
Over the past 20 years, dance has emerged as a safe, effective, and evidence-based community intervention that helps thousands of people living with Parkinson’s disease around the globe maintain well-being and improve quality of life. From its initial emergence to the present, COVID-19 has posed fundamental challenges to people living with Parkinson’s, forcing them to balance the need and desire to stay active and socially connected with the requirement to adhere to strict shelter-at-home orders. As cities and towns worldwide began shutting down in early 2020, people living with Parkinson’s found themselves unable to access live dance activities that had provided consistent, reliable physical support; joyful cognitive stimulation; emotional connection; and social engagement. Government sanctioned closures and stay-at-home orders increased the potential for apathy, isolation, anxiety, and stress—factors that are already heightened in people with Parkinson’s. COVID-19 also exacerbated disparities based on race, language, socioeconomic background, and age, inequities already present in the Parkinson’s community and in Parkinson’s-focused dance programming. In this article, the authors provide a description and analysis of ways one dance for Parkinson’s program addressed multiples challenges through three key initiatives: online group classes in English and Spanish, telephone-based resources for people without internet access, and robust online training opportunities for teaching artists. The authors outline ways in which the pandemic has increased the inclusive nature of dance for Parkinson’s programming and suggest that changes implemented during the pandemic will permanently alter program delivery for the better when it is safe to restore group classes in community settings.
Keywords
An estimated 7 to 10 million people around the globe live with Parkinson’s disease (PD), with more than 1.2 million of those in the United States (Marras et al., 2018). PD is the fastest growing neurodegenerative disorder in the world, prompting leading neurologists to call the disease a “pandemic” (Dorsey et al., 2018). People living with Parkinson’s commonly experience motor and nonmotor challenges, including rigidity, slowness of movement, tremor, postural instability, depression, and social isolation (Massano & Bhatia, 2012; Subramanian et al., 2020). Living with a chronic, degenerative disease for decades can diminish a sense of physical control and agency, losses that affect confidence, self-esteem, relationships with others, and a sense of hope. In certain regions, people with Parkinson’s have few positive community outlets and may try to avoid social interactions to hide their condition. This isolation has a direct effect on their senses of identity and independence, their levels of stress, and their mental health (Subramanian et al., 2020).
Group dance classes invite people with Parkinson’s to engage in a nonclinical, artistic experience that focuses on the art and craft of dancing while addressing physical, cognitive, and psychosocial challenges associated with the disease. Dance classes welcome individuals with Parkinson’s to enter the studio as dancers and lifelong learners, not as patients, and to be part of a creative community. By focusing on dance, an essential and life-affirming human activity, people have an opportunity to regain a sense of confidence, agency, physical possibility, connection, and joy. The Dance for PD program—administered since 2001 by Mark Morris Dance Group (MMDG), an internationally acclaimed modern dance company based in Brooklyn, New York—leverages dance activities to positively transform the health, overall well-being, and sense of community connection among people living with Parkinson’s. Built on the principles of demedicalized creative arts education rather than as clinical therapy, Dance for PD—with affiliates in 25 countries—emphasizes the value of arts programming as a public health tool (Butt, 2017). With its high adherence rates, interactive social components hardwired into the curriculum, and focus on adaptive accessibility, Dance for PD’s live classes in dance studios, community centers, and medical facilities around the world have been designed to address Parkinson’s-related public health issues such as apathy, reduced motor skill, isolation, anxiety, and helplessness while preserving integrity of the art form (Westheimer et al., 2015). In Dance for PD classes, teaching artists integrate movement from diverse cultural genres such as modern, ballet, tap, theater dance, dances from the African diaspora, social dance, improvisation, and choreographic repertory to engage the participants’ minds and bodies and create an enjoyable social environment that emphasizes dancing for dancing’s sake. The dance class is an aesthetic, interactive experience that focuses on developing artistry and grace.
Influencing the self-efficacy, outcome expectations, and self-management behaviors of those living with Parkinson’s, Dance for PD has played an important role in encouraging and habituating people living with Parkinson’s to adopt positive behaviors that help them live well with Parkinson’s beyond the dance studio (McRae et al., 2017; Ventura et al., 2016; Westheimer, 2008). Research and anecdotal evidence point to the ways in which Dance for PD has emerged as a game changer for people with Parkinson’s because participation in dance has the ability to change behavior—from sedentary, isolated, apathetic, lonely, and disengaged to involved, connected, belonging, active, and motivated (Mcneely et al., 2015; Shanahan et al., 2015). As Edward Ehlinger (2010) noted in featuring the Dance for PD program for the Minnesota cable access program A Public Health Journal, “Improving the social circumstances for people, and making it easier for people to make healthy choices, is the work of public health.”
COVID-19’s shelter-in-place requirements posed fundamental challenges to the core tenets of Dance for PD’s contact- and community-based interactive approach, and to people living with Parkinson’s—many of whom by virtue of age or comorbidities fit into a higher risk group. As cities and towns around the globe began locking down, Dance for PD suspended in-person programming, and people living with Parkinson’s found themselves unable to access activities that had provided consistent, reliable physical support; joyful cognitive stimulation; emotional connection; and social engagement. By suspending access to regular physical and social activities, government-sanctioned closures and stay-at-home orders increased the potential for apathy, isolation, anxiety, and stress—factors that are already heightened in people with Parkinson’s (Bhidayasiri et al., 2020; Helmich & Bloem, 2020; Subramanian et al., 2020; Van der Heide et al., 2020). In addition, there is evidence that COVID-19 itself can worsen Parkinson’s symptoms (Brown et al., 2020; Cilia et al., 2020).
As COVID-19 shut down dance programming in New York City and around the world, the pandemic forced constituents to navigate a difficult balancing act in which the need and desire to stay active and connected directly conflicted with the need to adhere strictly to shelter-at-home orders. As well, mirroring similar dynamics in health care delivery, COVID-19 had the potential to quickly exacerbate disparities based on race, language, socioeconomic background, and age, inequities program staff were already witnessing in live programming. In this article, we provide an overview of three strategies—online classes, low-tech phone resources, and online teacher training—piloted and executed to address COVID-19 barriers and challenges and make the case for why these strategies should be embedded into future program development as we move into a postpandemic environment.
Method and Results
On March 13, 2020, the Dance for PD program announced an immediate suspension of all in-person programming in response to the spread of the novel coronavirus. In doing so, program staff ran the risk of countervailing one of the key principles of Dance for PD: access to free, reliable, inspiring, supportive, and meaningful dance experiences led by compassionate, trained teaching artists and musicians.
Ten days later, Dance for PD launched its first pilot class on Zoom—a rapid reorganizing strategy to serve our population’s needs. Although Dance for PD had been offering a monthly streamed class from its Brooklyn studios, utilizing an interactive platform like Zoom was untested by program staff, teaching artists, and constituents. Rather than simply providing prerecorded videos, Dance for PD prioritized interactivity as an essential element of the class experience and, therefore, required that interactive components be included in any digital simulation of the standard studio-based class.
Feedback from a virtual town hall-style conversation with local constituents at the outset of the pandemic highlighted the importance of structure and routine. After 1 week, program staff expanded the frequency of Dance for PD digital offerings to take place every day and grew available resources to include two levels of Dance for PD, Sing for PD, guided meditation, yoga, and Pilates, as well as master classes in specialized dance styles and wellness practices, all specifically for people living with Parkinson’s and their partners. In keeping with the mission of the MMDG, live music is part of at least one class per week, and all regularly scheduled classes are offered free of charge.
Although program staff originally designed online classes with New York City constituents in mind, digital programming soon attracted participants from 38 countries around the world. At the peak of the global lockdown in late Spring 2020, more than 600 people from six continents were logging in to participate in live Zoom sessions each week, with another 2,500 to 3,500 using our prerecorded videos on demand. The program registered more than 1,800 unique Zoom class participants from April to December 2020. Noted one participant, “These dance classes are the highlight of my week. Thank you so much for making them so accessible to all of us wherever we are worldwide” (personal communication, July 27, 2020).
The absence of geographic restrictions in online programming during COVID-19 also presented a unique opportunity to realize and test a longtime goal of increasing participation from those within historically oppressed groups, including individuals who do not speak English. When the pandemic derailed plans to launch a pilot series of Dance for PD classes in Spanish (Dance for PD en español) in New York City, program staff partnered with the Muhammad Ali Parkinson Center in Phoenix, Arizona, to present Dance for PD’s first Spanish-language Dance for PD class on May 13, 2020, to more than 100 Spanish-speaking participants from across the United States and eight other countries. In addition to providing a translated experience that dismantles linguistic barriers to participation, Dance for PD’s classes in Spanish are an exploration and celebration of the vibrant, unique dance and music cultures of Spanish-speaking countries offering culturally tailored programming to better reach those with Parkinson’s. Two class participants shared their impressions: “Me encanto la clase en español. Yo atiendo todos los clases de Dance for PD y me encantan pero me sentí más en familia tomar la clase en mi idioma nativa.” | I loved the class in Spanish. I attend all Dance for PD classes and I love them, but I felt more among family taking the class in my native language. (personal communication, May 17, 2020) “Es excelente que puedan abrir a la comunidad de habla hispana y sudamericana ya que para nosotros estos momentos de pandemia son difíciles con nuestros adultos mayores en confinamiento.” | It is great that you are able to open up to the Spanish-speaking and South American communities as these moments of pandemic are difficult for us older adults in confinement. (M. Zambra, personal communication, June 10, 2020)
Whether in English or Spanish, online programming is structured to foster conversations as part of the class experience. After each live class, digital breakout rooms invite participants to cultivate personal connections in a more intimate setting and offer Parkinson’s-related support through small-group discussions. Participants have discovered and fortified friendships without the impediments of travel or geography, and they value the opportunity to reach out to others while managing their Parkinson’s- and COVID-19-related social isolation.
Breakout rooms have celebrated 80th birthdays and the births of new grandchildren, but the opportunity for connection has been especially necessary when community members experience loss. Whether or not deaths were related to COVID-19, self-isolation recommendations and restrictions on group gatherings impeded the observance of rituals designed to process loss and navigate grief; in particular, restrictions robbed friends and family of the meaningful opportunity to say goodbye. In conjunction with Dance for PD classes, breakout room conversations leverage technology as a new way to mourn, a means to lessen the painful emotions compounded by the present circumstances of the pandemic. These virtual gatherings provide essential space to share stories and photos or simply reflect in supportive silence; like the adaptation of our classes, it is a creative solution to connection that transcends boundaries and promotes healing.
As much as digital programming supports a global audience with accessible, interactive classes and conversation, it also has the potential to exacerbate existing disparities and create new ones. For people living with Parkinson’s without internet access or computer skills, a robust online community is as frustratingly impossible to access as a temporarily shuttered dance studio.
Digital programming provides constant reminders of presence—logins recorded, registrations received, dozens of faces moving in little boxes, and constant chat threads. Markers of absence are much harder to see, making it more difficult to know who is not in the room. In response, program staff, assisted by program volunteers and colleagues from MMDG, made hundreds of telephone calls to check in on constituents and determine their ability to access resources. Conversation notes indicated the challenges some of our participants faced: This was my first conversation with S and we spoke for over an hour. She’s having a hard time, probably needs more frequent and specialized attention. She doesn’t/cannot use a computer, so any online resources are not an option. Due to the warnings for elderly people with underlying conditions, her family (daughter, grandsons) are minimizing contact and have instructed her not to go outside out all, even for walks, which were a huge contribution to her wellbeing before; her home health aides are also declining to take her outside . . . due to liability fears. So she’s essentially stuck at home with (as she feels) nothing to do; she wakes up later in the day than she used to and moves very little within the small space of her apartment. (T. McCue, personal communication, March 30, 2020)
Such responses encouraged staff to think more broadly about how to ensure that dance programming might be accessed by phone. Inspired by the field of audio description—the skill of translating the details of live performance for those who are blind and visually impaired—program staff created a Dance by Phone experience for community members who were, quite literally, cut off from the virtual world and hungry for a somato-artistic journey.
The Dance by Phone program integrates arts and accessible technology to address PD management in an affordable, accessible, and scalable way. Over the course of a week, a Dance for PD teaching artist recorded a series of dance activities with clear, open-ended verbal prompts set to music specially produced and recorded for phone users. Each activity was under 3 minutes—the amount of time Dance for PD’s VoIP (Voice over Internet Protocol) phone system would allow on an outgoing message—but each was designed to feel like a complete dance and established a creative experience that could cultivate a sense of focus, artistry, comfort, and enjoyment to anyone with a phone. During the initiative’s first week, calls came in from New York City and from across North America (the phone service uses a toll-free number for the United States and Canada so there is no charge for the caller). Combined with live phone-in support groups and interactive guided meditation sessions, Dance by Phone offers an imperfect but accessible life raft for the most isolated members of the Parkinson’s community.
Since 2007, Dance for PD staff have trained more than 2,000 teaching artists, therapists, professional dancers, movement coaches, and allied health professionals to harness Dance for PD’s knowledge, methods, and approaches in support of people living with Parkinson’s around the world. COVID-19 made impossible the live, in-person, hands-on experience that had been a critical component of Dance for PD’s training experience.
Dance for PD’s last two live training workshops took place in Pasadena, California, and Spokane, Washington, in early March 2020. Program staff instituted strict safety protocols—physical distancing, rigorous cleaning of all surfaces, adaptation of the demonstration class to include only trainees and no Parkinson’s participants—and the workshops nurtured necessary growth in West Coast networks. By the end of March, however, it became clear that such in-person trainings would not be possible for the foreseeable future even though there was a marked increase in demand for online Dance for PD programming, a drastic reduction in other work opportunities for dancers, and an urgent need for revenue-generating activities to ensure the sustainability of Dance for PD and the survival of the MMDG. As a result, staff moved quickly to convert training workshops to an interactive virtual environment.
At the first online workshop in late May 2020, 24 trainees from the United States, Canada, Germany, Portugal, and the United Kingdom participated in 3 days of analysis, discussion, practice teaching, and an online demonstration class and a Q&A session with Parkinson’s dancers. For the first time, the training curriculum also included a special module devoted to recommended practices for safe and effective online teaching based on strategies accrued and honed through online community classes.
As with live digital community classes, the online training workshop—a format that would have been unimaginable just 2 months before—revealed unacknowledged inequities and deficits in Dance for PD’s in-studio model. First, travel—either for trainees coming to New York City or for program staff traveling to facilitate workshops nationally or internationally—was difficult and expensive, imposing a significant carbon footprint and diminishing the potential reach of this work. In providing access to rigorous training from living room to living room, online workshops significantly increased the accessible, inclusive, and global nature of the training program while reducing costs and carbon emissions and opening a greater number of possibilities to establish affiliate classes in new communities.
Second, in preparation for the online workshop, program staff created a training video library that showed a range of various established Dance for PD teachers leading activities in different styles and with diverse Parkinson’s participants. Access to such a range of teaching approaches would have been impossible in a standard live training, which usually includes a maximum of two facilitators. By seeing videos of different teachers working in the context of actual classes with live music, and by observing the responses of the Parkinson’s dancers, trainees gained invaluable insight that previously had only been available during a 90-minute demonstration class.
The online experience also honored the spectrum of trainees’ social-emotional needs. With the reduced pressure of a virtual group environment, the option to participate without enabling a webcam, and the various options to connect with facilitators during the workshop (group chat, private chat, verbal questioning), introverts and extroverts alike were able to focus more intently on their learning process without the distraction of temporary but sometimes challenging group dynamics. Finally, training arts-in-health teaching artists to become comfortable, skilled online class facilitators feels ever more critical as trainees try to sustain themselves in the uncertain times ahead.
Discussion
At first glance, even with strategies that bend a two-dimensional technology for the purpose of simulating a dynamic Dance for PD group class, the online experience falls short. From a pedagogical perspective, critical elements of spatial awareness, focus, touch, partnering, and spontaneous interaction are difficult if not impossible to replicate in a digital format. Socially, though online classes and breakout rooms provide channels for genuine connection and exchange, virtual interactions cannot replace the vibrant, nuanced, physical sense of engagement and acceptance when one is occupying the same space as another human being. On the other hand, the adaptive strategies described in this article also illuminated shortcomings in the way pre-COVID in-person programming had manifested values of access and inclusion, and online work suggests opportunities for improvement that can affect future programming for people with Parkinson’s as well as for other populations.
Over the past 10 months, the rapid review and revisions the program made have resulted in increased access to programming, increased frequency of participation, expanded participation opportunities for Spanish speakers, reduced stressors for those joining the program for the first time, and a reconfigured training model that reduces cost, travel burden, and environmental impact for teaching artists.
For participants, trainees, and teaching artists in any community model, interactive streaming removes the barriers to access that onsite programming poses. Dramatically increased engagement in online programming—even among participants living in New York City and among those already participating in live classes—points to the need for ongoing online activities that can be done safely and enjoyably at home. Participants who struggled to attend one class a week, and contended with the logistical challenges of doing so, can participate in multiple experiences each week, thereby amplifying the physical, social, and emotional benefits of the program. Technology also enhances the depth of the artistic experience for participants. For example, teaching artists sharing choreographic repertory in online classes can easily refer to video resources in real time to provide participants with an artistic source and context for the movements they are learning.
Online classes also provide a safe and supportive entry point for new and newly diagnosed participants who may feel self-conscious or anxious about joining a live group class. The ability to take class anonymously, by creating an alternate screen name or by turning off one’s camera, provides a level of privacy that seems vitally important as program staff consider the format of future programming and create systems that allow the newly diagnosed to explore the benefits of dance without revealing their identity.
The success of classes in Spanish, and the benefit of forging out-of-state partnerships with institutions like the Muhammad Ali Parkinson Center, has paved the way for additional classes—as well as training and professional development workshops—in Spanish and other languages. The online format also acknowledges other scarce resources—time and money. It can be difficult for teaching artist trainees to take 3 full consecutive days out of their schedules to attend a workshop, particularly if their economic status requires them to teach multiple classes each day or work another job. The online format allows staff to consider alternative, flexible training schedules—4 Saturdays or a series of mornings or evenings only, for example, as well as monthly professional development workshops that can be easily accessed without any need for travel.
For Dance for PD, and for other community-based arts in health programs that provide critical support to thousands of constituents, the COVID-19 pandemic has created immense challenges while pointing the way to a better way of working that highlights access, equity, and flexibility. As program staff plan activities for the next 12 to 18 months, online programming offered several times a week will run parallel to the anticipated availability of in-studio programming at the Mark Morris Dance Center and at other New York City locations. In addition to classes offered specifically for a Zoom audience, Dance for PD staff will test hybrid class models by welcoming a limited number of in-person participants (determined by public health and safety recommendations) while relaunching a streaming initiative that broadcasts in-studio classes to its broader community.
The pandemic has permanently affected programming in ways that will render Dance for PD a more inclusive, diverse, and accessible arts in public health model. Rather than returning to the normal we knew, we envision a truly inclusive and accessible program that invites everyone to harness dance, music, and community in the service of health, well-being, and joy, whether in person or from the comfort of home.
Footnotes
Authors’ Note:
The authors wish to thank Nancy Umanoff, Mark Morris, Eva Nichols, Natasha Frater, and Amy Bauman. Maria Portman Kelly has been the Programs and Engagement Manager for the Mark Morris Dance Group’s Dance for PD program since 2011 and is pursuing an MA in disability studies from CUNY School of Professional Studies. David Leventhal, a former dancer with the Mark Morris Dance Group, is Program Director and Founding Teacher for the Dance Group’s Dance for PD program.
Supplement Note:
This article is part of the Health Promotion Practice supplement, “Arts in Public Health.” The supplement includes exciting projects, strategies, frameworks, practices, and places that advance health through the arts. The Society for Public Health Education is grateful to the University of Florida Center for the Arts in Medicine and ArtPlace America for providing support for the issue. The entire supplement issue is available open access at
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References
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