Schrag https://normt.uib.no/index.php/voices/rt/printer...

Voices: A World Forum for Music Therapy, v. 15, n. 3 (2015)

[Invited Submission: Special Issue]

A Triple Insider's Take on Arts Therapy,

Arts-based Community Development, and
Huntington's Disease
By Brian Schrag

Abstract
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.

1 de 14 01/01/1970 01:31
Schrag https://normt.uib.no/index.php/voices/rt/printer...

Grappling with revelations

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 Schrg. 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.

Poltica de Cookies

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

2 de 14 01/01/1970 01:31
Schrag https://normt.uib.no/index.php/voices/rt/printer...

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 phenomenonsocial censureled 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?
HDBlues.org

Poltica de Cookies

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,

3 de 14 01/01/1970 01:31
Schrag https://normt.uib.no/index.php/voices/rt/printer...

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 T-shirts from HDBlues.org
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.

Connecting arts with the needs of people

affected by HD
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

put on a heritage festival

that includes local genres of cheerleading, dance, marching band, DJing
competitions, and visual arts
that communicate core values for community life: self-esteem, repentance,
forgiveness, and teamwork
that move persons to change their ideas and actions
so that the community increases in well-being.

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

4 de 14 01/01/1970 01:31
Schrag https://normt.uib.no/index.php/voices/rt/printer...

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.

1. Identify and describe needs and aspirations

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 Ive 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.

5 de 14 01/01/1970 01:31
Schrag https://normt.uib.no/index.php/voices/rt/printer...

This is often difficultit 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 experiencelike 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.

2. Identify and describe kinds of artistry in clients'

history
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.

6 de 14 01/01/1970 01:31
Schrag https://normt.uib.no/index.php/voices/rt/printer...

3. Nurture creation and performance of artistry

that moves people toward greater well-being
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."

4. Evaluate how the artistry helped attain the

goals and plan next steps
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...".

Implications for Arts-Based Professionals

working with People with Medical Diagnoses
Reflecting on my experiences through the lenses of HD struggler, development

7 de 14 01/01/1970 01:31
Schrag https://normt.uib.no/index.php/voices/rt/printer...

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.

Learn First
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
Schfer, 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

8 de 14 01/01/1970 01:31
Schrag https://normt.uib.no/index.php/voices/rt/printer...

(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.

Methods
Methods for eliciting the artistic biography include interviews with the
client, interviews with the client's family and other social networks,
and exploring official records. The more memories and experiences a
client has, the more time you should spend eliciting their history.
Cognitive, emotional, and communicational capacity determine the
methods of drawing out a client's history and how much you can
assume particular musical experiences. Even if you share much of the
same popular culture, you need to investigate.

Make a list of artistic episodes

Ask questions directly related to artistic experience, like these:

Think of times you remember singing, dancing, acting or

pretending, drawing, painting, sculpting, making stuff with
your hands.
Think of times you remember listening to music, watching
videos, attending a concert or play or musical.
Do you have a collection of songs or videos? If so, what do
you have?

Ask question about life events and social contexts that often include
artistry, like these:

Birthdays, weddings, funerals, rite of passage

(Quinceaera, bar or bat mitzvah, debutante ball, etc.)
Games, school, sports, etc.
Historical events, like the September 11 attacks on New
York City in 2001.

Table: Eliciting a client arts biography

9 de 14 01/01/1970 01:31
Schrag https://normt.uib.no/index.php/voices/rt/printer...

Describe artistic episodes

Gather information about each episode with questions like these:

When did this occur?

Where were you?
How often did this happen?
Who did you do this with?
What were you doing? Listening? Singing? Dancing? etc.
What language(s) were being used?
What objects were there: musical instruments? a radio?
fancy clothes?
Do you like what happened? Does it make you feel good,
scared, excited, or something else when you think of this?
What did this experience bring you today?

Organize and use the information

Make a list of artistic genres associated with episodes

Make a timeline of episodes
Explore with the client(s) how his or her creativity of a
particular type could help address a problem.

Always Treat Your Clients as Members of Communities

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

10 de 14 01/01/1970 01:31
Schrag https://normt.uib.no/index.php/voices/rt/printer...

principles and steps at MakeLifeHD.org to your clients' contexts.

Advocate for your Clients

During the months and years before Mom was diagnosed with HD, my fathera
normally patient manbecame 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,

11 de 14 01/01/1970 01:31
Schrag https://normt.uib.no/index.php/voices/rt/printer...

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 storytellingneurotherapeutic 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.

Conclusion
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 otherenjoying 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.

12 de 14 01/01/1970 01:31
Schrag https://normt.uib.no/index.php/voices/rt/printer...

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.

References
Bassler, S. (2009). But you dont look sick": A survey of scholars with chronic,
invisible illnesses and their advice on how to live and work in academia. Music
Theory Online 15(3&4). Retrieved from www.mtosmt.org/issues/mto.09.15.3
/mto.09.15.3.bassler.html

Bassler, S. (2014). "But you don't look sick": Dismodernism, Disability Studies and
music therapy on invisible illness and the unstable body. Voices: A World Forum
for Music Therapy 14(3). doi:10.15845/voices.v14i3.802

Beevers, W. A., Morris, M. E., & McConville, J. (2015). Music used in dancing
classes for people with Parkinson's Disease: Rationale and validity of instruments
and methods. Voices: A World Forum for Music Therapy 15 (1).
doi:10.15845/voices.v1i1.781

Borczon, R. M. (2004). Music therapy: A fieldwork primer. New Hampshire:

Barcelona Publishers.

Croom, A. M. (2014). Music practice and participation for psychological well-being:

A review of how music influences positive emotion, engagement, relationships,
meaning, and accomplishment. Musicae Scientiae 19, 44-64, first published on
December 5, 2014. doi: 10.1177/1029864914561709

Delval, A., Krystkowiak, P., Delliaux, M., Blatt, J., Derambure, P., Deste, A., &
Defebvre, L. (2008). Effect of external cueing on gait in Huntington's Disease.
Movement Disorders 23(10), 1446-1452. doi: 10.1002/mds.22125

Earhart, G. M. (2009). Dance as therapy for individuals with Parkinson Disease.

European Journal of Physical and Rehabilitation Medicine 45 (2), 231-238.

Genova, L. (2011). Left neglected. New York: Gallery Books.

Genova, L. (2013). Love Anthony. New York: Gallery Books.

Genova, L. (2014). Still Alice. New York: Pocket Books.

Genova, L. (2015). Inside the O'Briens. New York: Gallery Books.

Lamont, A. (2011). The beat goes on: Music education, identity and lifelong
learning. Music Education Research 13(4), 369-388. doi:
10.1080/14613808.2011.638505

Navarro Wagner, A. (2015). The art of re-framing. Voices: A World Forum for
Music Therapy 15(1). doi:10.15845/voices.v1i1.769

13 de 14 01/01/1970 01:31
Schrag https://normt.uib.no/index.php/voices/rt/printer...

Jones, J. D. (2006). Songs composed for use in music therapy: a survey of original
songwriting practices of music therapists. Journal of Music Therapy 43(2),
94-110. doi:10.1093/jmt/43.2.94

Marshall, F. J. (2010). The effects of music therapy on depression, chorea and

other symptoms of Huntington's Disease. ClinicalTrials.gov identifier:
NCT00178360. University of Rochester.

Pereira, C. S., Teixeira, J., Figueiredo, P., Xavier, J., Castro,S. L., & Brattico E.
(2011). Music and emotions in the brain: Familiarity matters. PLoS ONE 6(11),
e27241. doi:10.1371/journal.pone.0027241

Schfer, T., Smukalla, M., & Oelker S. (2013). How music changes our lives: A
qualitative study of the long-term effects of intense musical experiences.
Psychology of Music 42, 525-544. doi:10.1177/0305735613482024

Schrag, B. (2013). Creating local arts together: A manual to help communities

reach their kingdom goals. [General editor, James R. Krabill]. Pasadena: William
Carey Library.

Spinney, L. (2009). Battling Huntington's Disease. Intelligent Life. Retrieved from:

www.moreintelligentlife.com/content/laura-spinney/health-different-battle .

Thaut, M.H., Miltner, R., Lange, H.W., Hurt, C.P., & Hoemberg, V. (1999). Velocity
modulation and rhythmic synchronization of gait in Huntington's Disease.
Movement Disorders 14(5), 808-819.
doi:10.1002/1531-8257(199909)14:5<808::AID-MDS1014>3.0.CO;2-J

van Bruggen-Rufi, M., & Roos R. (2015). The effect of music therapy for patients
with Huntington's Disease: A systematic literature review. Journal of Literature
and Art Studies 5, (1), 30-40.

14 de 14 01/01/1970 01:31