[Invited Submission: Special Issue]
By Brian Schrag
In this article, I reflect on my experiences as someone with Huntington's Disease who works professionally as a development ethnomusicologist, and who creates musical, video, and graphic arts for healing in communities I know. People struggling with disease and trauma benefit enormously by identifying their needs and goals, finding and valuing their artistic resources, and sparking creativity from within their and their social networks' artistry that addresses those needs. Therapists and others can contribute to these processes best by using methods that include eliciting artistic biographies, sparking community creativity, and becoming multiartistic activists.
Keywords: Huntington's Disease, applied, expressive arts, artistic biography.
My wife and I stepped uneasily into an office on the 7th floor of a UT Southwestern Medical Center building. Our genetic counselor greeted us, asked us to sit down, and glanced at the envelope in her left hand: "I'm afraid the results are not what we wanted. You have the mutation that causes Huntington's Disease." That moment marks my admission into the inner circle of people whose lives are filled with a sense of genetic violation, a first-person entry into horror stories that used to be only Mom's and Grandpa's, the likelihood of being an unwitting channel that pulls my own children into the same story. It was also the moment that propelled me into wanting to be a champion for people affected by Huntington's Disease (HD).
In this article, I write primarily as a sufferer and fighter of a fluidly visible disability. I will reflect on my story based on insights drawn from experiences and studies as a community artist and development ethnomusicologist. My goal is to offer a set of insights, activities, and tools applicable and modifiable to any context where people are trying to draw on music and other arts to improve their and others' lives.
Huntington's Disease peppered family discussions and speculation since I was a child. My mom, dad, three siblings, and I moved to Ohio from Kansas when I was eight, and every summer we traveled back to see Grandma and Grandpa. Grandpa was always in the nursing home, lying in a bed, wobbling his head and limbs, sedated, painstakingly asking for a kiss on his scratchy cheek from each grandchild. We knew that Mom had a 50/50 chance of getting HD, and that if she did, we would also be at risk. Years, then decades passed, Grandpa died, but Mom seemed to have escaped. In her mid-60s, though, people began to notice extraneous movements, cognitive peculiarities, so Mom gave blood for her neurologist to test for the huntingtin gene mutation. The results came back positive in 2008, jolting her and her four children and eight grandchildren out of our unfounded comfort.
I am a community artist. I compose and perform songs for family and friends' weddings, funerals, anniversaries; romantic songs for my wife, embarrassing-yet-touching songs for my children; spiritually invigorating songs for professional colleagues' retreats; and songs marking important moments in my sojourn as a Christian. I've started doing community theater, experimenting with Spoken Word poetry and a slightly-off-kilter video character named Schräg. So when my mom was diagnosed with HD, I wrote her a song. "Leaves" references warm memories we share and includes a refrain of an old gospel song: "Build your hope on things eternal. Hold to God's unchanging hand." My goal was to encourage Mom, reminding her of the beauty and relationships in her life, her faith in Christ, and the expectation of a concretely imaginable better future in Heaven.
Since 1993, medical labs have been able to test blood samples for the genetic mutation that causes HD. Results require a seemingly straightforward interpretation: If the sample reveals 39 or fewer repeats of CAG protein sequences on a particular gene on chromosome 4, the person will not show symptoms of HD in their lifetime. If 40 or more, they will. My mother and I share the same CAG repeat count, 41. But beyond this yes or no, current science has little to offer. Your number only vaguely correlates with age of onset, kinds, order, or severity of symptoms.
Most people at risk for HD choose not to be tested. I, on the other hand, felt immediately compelled to find out. I am someone who likes to know as much about my self and environment as possible. I also felt that I could make more-informed long term plans, discuss life choices with my children and wife, draw on the sense of heroism that sometimes accompanies identification of a hideous dragon to slay, and develop wisdom that comes from acknowledging my mortality. I received my test results at the end of 2008. After an initial year or so of emotional torment, the benefits of knowing have grown beyond my expectations.
Mom's and my genetic results motivated my wife and me to become involved with the Huntington's Disease Society of America (HDSA), initially through joining a Dallas/Fort Worth support group. My symptoms thus far are mild, consisting of increased anger and depression, manageable loss of a narrow range of cognitive capacities, and jumpy eyebrows. Our support group included people whose lives were much more immediately and devastatingly affected by HD: Deaths of spouses and children; loss of jobs; caregivers at their wits' end; divorces; active social censure and intrusion. This final phenomenon—social censure—led to my second bit of HD-related creativity, "HD Blues."
HD presents through affective, cognitive, and motor symptoms. The most visible signs are uncontrolled movements. Famously and agonizingly experienced by American activist-musician Woody Guthrie, people unaware of HD often interpret these movements as indications of drunkenness. One woman in our support group had been accosted twice by police for public inebriation: once while outside her house with her family, and another time when she accompanied her children and mother to the park; a concerned parent called the authorities.
Motivated by these and many similar stories, I wrote a blues song containing this imagined encounter:
No sir, officer, I am not drunk. I suffer from a genetic progressive
neurodegenerative disease causing gradual deterioration of movement,
cognitive function, emotional control, blurring of social boundaries and
inherited in an autosomal dominant pattern…. Are we good?
I performed the song first for our support group, then at regional HD education days, fundraising events, and an HDSA national conference. I designed a "No sir, officer, I am not drunk" t-shirt and a web site to promote the song and sell the shirt. Responses have been mostly positive, with some people identifying very closely with the song's sentiments and stories. My mother, who looks drunk all the time now, wears one of her large set of HD Blues shirts almost every day, relishing the conversations they inspire with police officers, friends, restaurant patrons, recreation center employees, and doctors. A modest but successful crowdfunding project has allowed me to give many of the shirts away (HD Blues on Kickstarter).
I have also begun to speak and present the song and shirts to physicians, neurologists, music therapists, and ethnomusicologists. Locations include UC San Francisco, University of Iowa, University of Limerick (Ireland), and a one-day seminar on medical ethnomusicology connected to an annual meeting of the Society for Ethnomusicology (SEM, 2013). At the SEM meeting I met Jane Edwards, who invited me to submit this article.
The arts-based community development I do flows from a confluence of ethnomusicology, performance studies, participatory methods of community engagement, and expressive arts therapies. Consultations normally consist of supporting a process through which community representatives 1) identify and describe their needs and aspirations; 2) identify and describe the kinds and contexts of artistry that engage people in the community; 3) nurture creation and performance of artistry that moves people toward greater well-being; and 4) evaluate how the artistry helped attain the goals. We then modify the process to make it better, and do it again (see Schrag, 2013).
At an Arts for a Better Future (ABF) seminar in Jamaica in 2014, for example, participants followed this process with seven communities. One group focused on the impoverished Old Harbour town near Kingston, developing this summary of their plans:
The Old Harbour community will
Plans like these work because artistic forms of communication are stunningly effective: they mark messages as important, separate from everyday activities; they touch not only cognitive, but also experiential and emotional ways of knowing; they are embedded in both individuals and communities, and so touch many important aspects of a society; they aid memory of messages; they increase the impact of messages through multiple media that often include the whole body; they instill solidarity in performers and experiencers; they provide socially acceptable frameworks for expressing difficult or new ideas; they inspire and move people to action; they can act as strong signs of identity; and they open spaces for people to imagine and dream.
I here reflect on my interactions with people affected by HD through the lens of these same four steps.
The first step in helping someone move toward a better future is to know what better looks like for them. People with HD experience a decline in the ability to control our bodies' movements; the appearance of unwanted emotions like depression and anger; and muddied reasoning. Our most obvious need, then, is to eliminate or reduce these symptoms. Family doctors, psychiatrists, neurologists, and physical and occupational therapists have tools to address some of these symptoms for a time. But because there is no cure yet, our symptoms persist and worsen. We lose our abilities to perform simple activities like walking, buttoning a shirt, drinking coffee without spilling, and speaking clearly. Our constant need remains a positive identity, seeing ourselves as competent and valuable, and helping others see us that way, too.
Perhaps the most difficult challenge for people with HD and their caregivers is to face the invincible, relentless, menacing dragon that seems to loom just on the horizon: HD described as the cruelest disease known to man (Genova, 2015, p. 1). The first exposure many people have to HD are depictions at its horrific worst. The film Alive and Well presents people who are clearly not well. And Chris Furbee's images of meeting his mother with Huntington's after years of separation continue to haunt me (Huntington's Dance). After finding out that he had the HD mutation, war correspondent Charles Sabine compared his experience of HD with a moment in Bosnia when he almost died: “Not that moment nor any other I’ve experienced instills more dread and terror than this disease” (Spinney, 2009). A friend whose wife has HD said to me, "It's like we're on a big slide that ends in death, always getting pulled down to new losses, and you can't get off." She has steadily worsening symptoms. Education campaigns, fundraising efforts, and people newly aware of HD often focus on the worst cases, the most heart-wrenching stories, and conflated time trajectories. This is good for raising money and motivating people to advocate for change in social security laws. But such images and solemn pronouncements are harmful when you want to help someone live a peaceful, joyful life today.
When Sabine martialed the brow-furrowed gravity of a reporter with bombs dropping in the background, he had no symptoms. HD for me this year is not a cruel disease. My mom experienced it as cruel when she was first diagnosed, but then rid her mind of images of her father's final days of battling HD. She started referring to her condition as unique, "my HD," empowering her and my dad to address the particular symptoms that cause problems at given moment. Because of the wide range, temporal unpredictability, and progressive nature of HD symptoms, it's important that therapists help clients identify the unique losses and aspirations that exist at a bounded point in time.
This is often difficult—it took me a year or two to fence off the specter of the HD dragon. Some of our difficulty in leaving the fear behind stems from the purpose and affirmation we experience—like heroes in war time. We are grimly determined soldiers receiving accolades from civilians on the sidelines. Sometimes I consciously take on this role when I need motivation to do something difficult. But therapy should include goals to develop a richer, reality-based identity; as we'll see, arts can help this happen.
The constantly changing manifestation of HD symptoms is further complicated because they ebb and flow in their visibility to different people. Bassler shows how academic communities treat colleagues with visible disabilities differently than those whose challenges are invisible (2009, 2014). Scholars with invisible illnesses like auto-immune disorders and depression are less likely to receive accommodation in work requirements, and experience more stress and ambiguity about if, how, when, and how much to reveal their weaknesses to others. People with HD first experience symptoms privately, but eventually present in contexts where they are noticed by others, by family, friends, or a professor's students. We often spend a great deal of energy trying to keep people from finding out. I practice keeping my face from moving erratically and try to explain to my students why I sometimes give lectures on the wrong day.
In addition, when some HD symptoms become visible, they mimic other disabilities that provoke social responses unrelated to our disease. Involuntary movements that resemble those of people who are drunk result in social perturbations: Concerned people call police when they see you with your small children; your presence becomes uncomfortable to other people so they avoid you; you may be arrested or placed in psychiatric confinement. People with HD, then, aspire to competency and agency in some life domains, and want to be understood and valued by the people they encounter.
I filled roles of both therapist and composer in my HD-fueled creativity. It was easy to identify the arts of the first HD community I wanted to encourage: Mom was a community of one, and I grew up experiencing her and others' artistry with her. Until very recently, she still played and sang hymns at the piano, and was also skilled on the organ and marimba. Though Mom was born and raised among the Mennonite farms of central Kansas, she somehow also developed a love of jazz, black gospel, and classical music. "Leaves" emerged as the kind of modal, spare, gospel-tinged song with poetic imagery that she would respond to.
I composed "HD Blues" for our Huntington's Disease support group, a community of between 10-20 people whose personal stories I knew well. Because I was a part of that group, and had found out my own genetic status, I felt unity and understanding. I didn't elicit the artistic biographies of all of us then, but connected my experience in playing blues with the stories people expressed. I later asked about the artistic experiences and skills in the rest of the group's social networks, but the blues genre emerged more organically.
People in the HD communities I know want their symptoms to diminish or disappear. Until that happens, they also need to maintain or develop a resilient sense of self-worth and understanding by other people. The "HD Blues" song and t-shirt answer some of these needs. For those who present in ways that others interpret as drunkenness, "HD Blues" provides a firm rebuke of the misinterpretation. It provides a space for HD strugglers to exchange a pitiable, hopeless identity for one of valor and heroism: "I'm fighting a disease with powers like neurodegeneration and autosomal dominance. Let's see you battle such a foe!" Technical language not commonly known puts others at social disadvantage, so people with HD experience an increased sense of agency and power. The shirt provides social armor, a force field. Like the "Je suis Charlie" and "Je ne suis pas Charlie" responses to the Paris massacre in January 2015, we subvert a tragedy by redirecting our fear into something we see as positive, a form of sublimation. The song and shirt also serve to educate people we encounter and cultivate a sense of solidarity among people affected by HD.
This brazen approach, however, does not serve everyone. Some people look with anxiety and fear at such openness: they don't want to draw more attention to symptoms that already embarrass and distress them; publicizing their HD would reveal the at-risk status of family members; and some come from communities who prize privacy: "I don't mind being open about HD, but not with everyone."
Experience with the "HD Blues" song and t-shirt helps people reframe their struggle with HD to something real, contributes to a stronger and more continuous sense of identity, and provides a means to educate the people around them. I've begun working on ways to allow more people to be involved in processes like these. In particular, MakeLife|HD guides people in the method of artistic cocreation I've just described. I've begun formalizing this approach through a publication entitled,"A Workbook for People Affected by Huntington's Disease Who Could Use a Little Hope." The Huntington's Disease Association of Ireland began the process outlined in the workbook, with encouraging results (see MakeLifeHD.org).
I have also begun developing an "I'm still in here" exercise booklet to help HD strugglers figure out how to explain themselves to others. It suggests conversation lead ins like these: "No, class, I am not daft...," "No, dear, I am not embarrassing you on purpose...," and "No, boss, I am not lazy...".
Reflecting on my experiences through the lenses of HD struggler, development ethnomusicologist, and community artist has reinforced the validity of many of my conceptions and opened my eyes to others. I encourage arts-based community workers to apply the four steps above to a context specific to their situation and let me know what happens. I also propose the following overarching principles to guide everything we do.
We should each make learning about our clients' artistic history our first step in any session, long-term intervention, or consultation. This requires looking beyond categories of music, dance, visual arts, drama, and storytelling to the client's actual experiences with artistic genres, each with its own unique set of artistic, social, and emotional features. "Broadway Musical," for example, is an artistic genre. Its performances include unique combinations and kinds of singing, dancing, acting, poetry, and visual arts, but can't be reduced to any one category like "music" or "dance."
Preparations for this article led me to Esther Craven (Music Therapist, Board Certified). She practices at a non-profit called My Possibilities, which provides continuing education for adults with disabilities. Esther's clients include Benedict, a young man with autism and associated communication difficulties. Benedict's communication skills have grown through participating in interactive music-making experiences. Another client, Sandy, has neurological degeneration, and comes alive most while listening to familiar, fast, rhythmic pop music. Esther interacts with Sandy, observes her responses, and changes musical materials to meet her needs in the moment. Discussion of Esther's activities with Benedict, Sandy, and other clients alerted me to a crucial elaboration of my ethnomusicology-based approach to community therapy: engagement with clients must be designed to fit their capacities to communicate.
I normally learn about a community or individual through extended interviews, recording and analysis of people's artistic production, and participant observation. This succeeds because I usually work with people who are able to communicate through highly complex linguistic and socioartistic systems. As I and other ethnomusicologists engage more in medical and individual therapeutic contexts, however, the more often we find ourselves with people who have significant cognitive and social limits. Esther's clients, for example, have a wide range of serious physical, neurological, emotional, or social disorders that preclude far reaching, in depth interviews.
Music therapists' methods for learning about their clients' musical history include asking for musical listening preferences and performance skills, interviewing family members and friends, and inferring musical experience from the client's demographic status. A clever therapist even has a good chance of helping a comatose person in a hospital by gleaning her name, age, religion, ethnicity, and home address from her intake chart; playing recordings of music popular during the client's late teens and early twenties may result in an ameliorating effect (see Schäfer, Smukalla, Oelker, 2013; Lamont, 2011; Croom, 2014; Pereira et al., 2011). Because of limited communicational capacity of their clients, music therapists normally bring their own instruments, play lists, and musical activities (Borczon 2004; Jones 2006).
I've derived a simple learning technique below from ethnomusicological research methods, adapted to account for a range of communicational capacity of our clients. Let me know how it needs to be changed.
Elicit an Arts Biographical Summary
Goal: Make a list of episodes or events when the client acted artistically, either through active production or listening, watching, smelling, feeling, or other sense. This list becomes a tool of resources for artistic expression that help clients meet their goals.
Make a list of artistic episodes
Ask question about life events and social contexts that often include artistry, like these:
Describe artistic episodes
Organize and use the information
Ana Navarro Wagner expressed the crisis she felt when working as a music therapist among Acholi children in Ghana: "How could music be everywhere but music therapy not work?" (2015). Navarro Wagner found that she could not connect with the Ghanaian children using the euroamerican-developed methods she had learned. She eventually discovered the reasons for her failure by looking at her experiences through the lens of community music therapy (CoMT). CoMT's participatory, resource-oriented, ecological, performative, and reflexive approaches would have highlighted ways to connect with the oral, event-oriented, solidarity-focused children. CoMT finds influences in anthropology, sociology, and musicology, and thus shares much with ethnomusicology. It shares the "Learn First" principle I proposed above: Discover how your clients' community views time, healing, spirituality, authority, and you enter into a more fruitful process of co-creation for healing, rather than external control.
Another benefit of viewing every client as a member of at least one community is that you can draw on that community for ideas, energy, and other resources. Learn to know your client's social networks, identifying people who can create for the client or the client's caregivers. Guided by the client's artistic history, help the client create in a genre she or he knows well, associates with positive feelings most. You don't need to be proficient in every genre to encourage others to create. Adapt the principles and steps at MakeLifeHD.org to your clients' contexts.
During the months and years before Mom was diagnosed with HD, my father—a normally patient man—became more and more frustrated with her. She spilled coffee on the rug, she broke off the sideview mirror while backing the car out of the garage, and she wouldn't help plan upcoming events. Dad said, "Part of me was glad when I found out Mom has Huntington's. Then I could look at her differently, not expect her to do everything the way she used to. I stopped blaming her and started helping her."
Therapists can spark similar processes by identifying their clients' particular needs and exploring all sorts of arts-related and other responses to those needs. I found that some of my HD deficits could be turned on their heads to become strengths, leveraging disability into ability. Blurred social boundaries, for example, allow me to be more outgoing and take more social risks, feeding into public artistry. I've grown as a comedian and humorist, spoken more openly as an advocate for people with HD, and have suggested more novel solutions to problems at work. Each social context in which I feel higher than normal freedom, however, requires someone I trust to keep me from going too far. After an awkward experience at a formal dinner, my wife and children convinced me to listen to their warnings in future events (if they're communicated graciously and discretely).
As different symptoms arrive for someone with HD, there is help: antidepressants for sadness; vocal coaching when speech becomes difficult; exercises to help someone swallow; and medicine, like tetrabenazine, to help reduce extraneous motions. Every medication has side effects, every therapy must be individualized and constantly reevaluated, and nothing will keep the person with HD from dying. But life with HD can be so much better today than it was when my grandfather suffered in the 1960s and 1970s. And medical research toward a cure is progressing full throttle. One prominent researcher, Ed Wild, states that Huntington's Disease is the most curable incurable brain disorder (HDBuzz.net).
In the meantime, though, arts-based therapies for people with HD and other diseases encourage me. Van Bruggen-Rufi and Roos' review of studies using music therapy to treat people with HD reveals promising benefits especially in the areas of "self-expression, social interaction, and communication" (2015, p. 38; see also Marshall, 2010). They conclude that optimal, consistent, replicable guidelines should emerge upon completion of larger scale studies correlating particular interventions to the unique symptoms of each individual. I suggest that researchers also build in elements I outline here in future studies, including clients' artistic autobiographies, community advocacy, and interventions comprising as many features of familiar artistic genres as possible, rather than abstracted musical elements. In addition, perhaps the success of dance therapy for people with Parkinson Disease can be applied to HD patients (Earhart, 2009; Beevers, Morris, McConville, 2015; see also Thaut, Miltner, Lange, Hurt, & Hoemberg, 1999; Delval et al., 2008 ). Dance and storytelling and singing reduce people's pain and anxiety, and improve their mood, in part because they provide forms that channel confused motions and thoughts into patterns of coherence. But even more fundamentally, artistic action can turn destructive thoughts inside out, move someone from a hopeless frame into one of hope.
Lisa Genova is developing a new genre of storytelling—neurotherapeutic novels—that provide multiple ways to experience such changes. Still Alice (2014) recounts the story of a brilliant linguist who contracts early onset Alzheimer's Disease. Inside the O'Briens (Genova, 2015) does something similar with a Boston policeman who starts experiencing symptoms of Huntington's Disease. Genova, a neuroscientist, places characters into scenarios common to people who know HD: being surprised by HD, agonizing over whether to get tested, survivor guilt, guilt about kids having the mutation, ways to live moment by moment in hope, and so on.
A full-length novel like Inside the O'Briens is an artistic form that allows lots of time for the reader to reflect, look for connections to previous parts of the story, identify with characters, and see how their situation differs from those in the story. And Genova is a therapist at heart, allowing her characters to feel extreme anguish, make mistakes, but eventually see hope. Genova also highlights ways that arts and ritual help her characters thrive: through putting proverbs and aphorisms on the wall; rediscovering their Catholic faith through prayer, and performing rites like the rosary and application of holy water; designing and wearing educational t-shirts; and yoga. Genova has provided similar neurotherapeutic novels focused on a nonverbal boy with autism (2013) and a vibrant mother with a brain injury causing hemispatial neglect (2011). I recommend reading any Genova book that portrays someone with a problem like that of your clients.
We can act in ways that protect, empower, and encourage our clients. Eliciting as much biographical and artistic information as possible, encouraging clients and their communities to create, and exploring a broad range of arts in therapies can energize these efforts.
Lauren Holder's experience at her first HDSA National Youth Alliance (NYA) conference inspires me:
I was a new NYA member, had never met anyone else in the HD community. I was scared and nervous, but the NYA took me in and made me feel like family. And the night of the gala, as I looked at everyone dancing, I became emotional. I ran to the restroom and started crying, which is where Susie found me along with some other NYA members. I wasn't crying because I was sad. I was crying because for the first time since I had tested positive for the HD mutation, I felt like I wasn't alone and like I could actually LIVE. Everyone on that dance floor was affected in some way by HD, but they were dancing and laughing and enjoying each other—enjoying life. It meant the world to me and has stuck with me since. When I go to convention, no matter where it is, it feels like home because of the people. They have become my family. That is the only way I know how to put it.
No, we are not drunk. Neither are our souls invisible. Our fundamental worth does not diminish as our deficits increase. We need everyone's help to stake these claims.
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