Sheryl Holt, Ph.D.,
is a career physical therapist who is currently completing her PhD in
rehabilitation science while working as an assistant professor in the doctor of
physical therapy program at Wheeling Jesuit University. She has lived with
hemiplegic cerebral palsy while serving children with disability for over 30
years. Her manuscript, “What the medical model can learn from the case of the
colorblind painter: A disability perspective" is featured in Volume 9,
Issue 4 of the Review of Disability Studies. She gives us a chance to
understand the journey of a painter, called Mr. I, and how his journey resulted
in a transformation in his work and in his life. The following interview with
Dr. Holt gives her the opportunity to expound on some of the ideas in her manuscript.
What role does passion
play in Mr. I’s decision to continue to paint and in his ability to move past
the difficulty of his condition?
Mr. I’s former passions in life had long ebbed before his new passions
emerged. That suggests that there may have been an empty desert time in which
other attributes of mind, heart, and soul paved the way for the return of
passion. I cannot help but wonder if the absence of passion was not critical
for its rebirth. I have heard some of my physical therapy patient’s make
reference to experiences like this: because they had known deep sorrow, they
believed they were able to find even deeper joys; because of their losses, they
appreciated more dimensionally all that remained. After Mr. I did his post-stroke
research, he began to meticulously integrate his findings into practice. In
trial and error fashion, step by step, Mr. I’s outlook, dreams, and reasons for
living began to find their shore, to display signs of celebration, hope, and
pure delight. Passion for his art and his world view was reborn.
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| Done 4 weeks after the accident |
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| Done just before the accident |
How does the story of Mr. I, the color
blind painter, inspire you personally?
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| Mr. I's "leaden" world |
Mr. I inspires me as a living narrative of
resilience, perseverance, and mustard seed faith. I am drawn to him both with
great curiosity and resonating admiration. I followed his series of insights as
if I were color blind myself. His choices shook my expectations with a jolt of
surprise, and the journey that followed was too compelling not to walk along. The
new sightedness of one fits with the emergent graces that self-impose upon one
who does not know of easy balance and coordination; with the strengths that are
borne in weakness, with the eternal streams found in things that fade quickly,
the ephemeral. I am inspired by the way Mr. I doggedly set the stage for his
own changes. He got to know himself better than any doctor,
family member, or therapist could. Mr. I refused to let loss or emptiness
define his status quo. He refused to let his impairments dominate him. He is
every patient with whom I have worked as a physical therapist. He is me. Also, I
deeply respect his calculated work of discovering shades of grey. Now when my
ink jet runs low in color or black ink, I treasure the grayscales like never
before. I may even study them. Mr. I
inspires me to rethink my investment in the NOW, my depths of perception in
what I see, and my willingness to continue to learn in ways both old and new. His
story enables me to look beyond the apparent, not just in bonafide hues, but in
life’s meanings.
What lesson can be taken from the story of Mr. I?
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| Done 2 months after the accident |
There are countless lessons that come to mind, but the lessons that I
believe are most germane to the human spirit are those in which he teaches us
about informed, empowered, self-respecting adaptation. His life changes
the moment he considers his “differences” not as deficits (about which he is
ashamed or embarrassed) but a means to new assets. He connives and schemes
ways to understand his color-blindness not only within his person, but also in
his occupations, hobbies and the environments in which he works. He challenges
himself to master his impairments, to know his limits, to cope with his losses,
to dream. With his ever-growing self-knowledge and pragmatic awareness, he
comes out of hiding and begins to live again, one grey-shade at a time. He
takes the chance and begins to share his new gifts. In doing so, it is apparent
that his motivation is not for the receipt of affirmation from others. It is a
risk, a vulnerability. Those elements are parts of his new and curious
strength. He follows his hunches, he believes in himself, he does not entrust
his choices to other’s perceptions of normal for him. He considers his options.
He rejects being fixed, in favor of
embracing all he is, as is, no turning back.
He seeks truth within
his own understandings; he is resourceful in building his evidence. He is
patient on his path.
Your study
examines common assumptions of the medical model and challenges the
presumption of the normal curve. What is the most important finding or
interpretation that excites you the most?
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| Done two years after the accident |
In
a nutshell, I reject a human normal curve that fails to accommodate all human
experience beneath it. We humans are not numbers or statistics and where we
fall in a statistical model is irrelevant to our value and our purposes in
life. Getting to an understanding of the expanses of human experience as an
international society has potential to change our language, our outlook, and
our capacity to accept and appreciate others, different from ourselves. There
is nothing normal about a normal curve. It is a fiction. I suppose that without
the social mechanisms of norming, certain aspects of life would feel
unmanageable, especially at the level of organizations, institutions, and
cultures. Norms serve these structures with prediction and expectation,
sometimes with seemingly necessary dictates to ensure what is needed for
survival of the many. However, the onus is on humans everywhere to recognize
when the normal curve does not serve outliers. This does not speak to validity
or valuation. It is important to discern that especially within the medical
model. Meeting people where they are will often be far from the canopy of the
normal curve. The courage to scatter those held hostage by the curve would
enlarge creativity, perceptions, and potentials. If you ask Mr. I, I am
guessing he’d say that the risk is worth calculating. Like him, when you are
ready to start pushing the bounds of normal, the journey will be your own. I
agree with Mr. I, that any other journey becomes meaningless, repugnant, and
distant to what makes you who you are. It doesn’t have to make life better,
just truer to the sojourner.
