"A triple insider's take on arts therapy,
artsbased community development, and Huntington's Disease"
Voices special 2015 edition
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.
_________________________________________________________________________________________________________
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 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.
Grappling With Revelations
Huntington's Disease was part of 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‐
1
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 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 drunkenness: 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 police.
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,
2
cognitive function, emotional control, blurring of social boundaries and
inherited in an autosomal dominant pattern…. Are we good?
HDBlues.org
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 (HDBlues.org). 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 in
academic contexts, for physicians
at UC San Francisco 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.
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
3
•
•
•
•
•
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
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 their 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 it, 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 2015:1). 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, always getting pulled down,
and you can't get off." She has steadily worsening symptoms. Education campaigns,
4
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). 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 somehow 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
5
community of one, and I grew up experiencing her and others' artistry with her. She
still plays and sings 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.
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
6
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
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
7
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 et al 2013; Lamont 2011b; 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.
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 (Quinceañera, bar or bat
mitzvah, debutante ball, etc.)
8
•
•
Games, school, sports, etc.
Historical events, like the September 11 attacks on New York City in 2001.
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.
Table: Eliciting a Client Arts Biography
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 principles and steps at MakeLifeHD.org to your clients' contexts.
9
Advocate for your Clients
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, 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" (2015:38; 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 et al 2015; see also Thaut et al 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
10
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 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 earlier 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 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.
11
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
Alluri, Vinoo, Petri Toiviainen, I.P. Jääskeläinen, E. Glerean, M. Sams, and E. Brattico.
2011. "Large‐scale brain networks emerge from dynamic processing of musical
timbre, key and rhythm." NeuroImage. doi:10.1016/j.neuroimage.2011.11.019
Baird, Aimee and Séverine Samson. 2014. "Music evoked autobiographical memory
after severe acquired brain injury: Preliminary findings from a case series."
Neuropsychological Rehabilitation: An International Journal 24:1: 125‐143,
doi:10.1080/09602011.2013.858642
Bassler, Samantha. 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)
______________. 2009. “But you don’t 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
Beevers, Winifred A, Meg E Morris, and Janet McConville. 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)
Borczon, Ronald M. 2004. Music Therapy: A Fieldwork Primer. New Hampshire:
Barcelona Publishers
Croom, Adam M. 2015. "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, Arnaud, Pierre Krystkowiak, Marie Delliaux, Jean‐Louis Blatt, Philippe
Derambure, Alain Destée, and Luc Defebvre. 2008. "Effect of External Cueing on
Gait in Huntington's Disease." Movement Disorders 23(10):1446‐1452
Earhart, Gammon M. 2009. "Dance as Therapy for Individuals with Parkinson
Disease." European Journal of Physical and Rehabilitation Medicine 45(2):231‐
238
Genova, Lisa. 2015. Inside the O'Briens. New York: Gallery Books
______________. 2014. Still Alice. New York: Pocket Books
______________. 2013. Love Anthony. New York: Gallery Books
______________. 2011. Left Neglected. New York: Gallery Books
12
Lamont, Alexandra. 2011a. "University students’ strong experiences of music:
Pleasure, engagement, and meaning." Musicae Scientiae 15: 229‐249.
doi:10.1177/1029864911403368
Lamont, Alexandra. 2011b. "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, Ana. 2015. "The Art of Re‐Framing." Voices: A World Forum for
Music Therapy 1(1)
Jones, JD. 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, Frederick 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, Carlos Silva, João Teixeira, Patricia Figueiredo, João Xavier, São Luis Castro,
and Elvira Brattico. 2011. "Music and Emotions in the Brain: Familiarity
Matters." PLoS ONE 6(11): e27241. doi:10.1371/journal.pone.0027241.
Saurman, Mary. 1995. "The effect of music on blood pressure and heart rate." EM
News 4(3):1–2
Schäfer, Thomas, Mario Smukalla, and Sarah‐Ann Oelker. 2013. "How music
changes our lives: A qualitative study of the long‐term effects of intense musical
experiences." Psychology of Music 42: 525‐544
Schrag, Brian. 2013. Creating Local Arts Together: A Manual to Help Communities
Reach Their Kingdom Goals. General editor, James R. Krabill. Pasadena: William
Carey Library
Spinney, Laura. "Battling Huntington's Disease." Intelligent Life Autumn 2009.
moreintelligentlife.com/content/laura‐spinney/health‐different‐battle.
Accessed May 15, 2015
Thaut, M.H., Miltner, R., Lange, H.W., Hurt, C.P. and Hoemberg, V. 1999. "Velocity
Modulation and Rhythmic Synchronization of Gait in Huntington's Disease."
Movement Disorders 14(5):808‐819.
van Bruggen‐Rufi, Monique, and Raymund Roos. 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
13